@nib32 yep I’m one for whom chemo didn’t offer 100% response, but I’m also still on the curative pathway and there are lots of plans B, C and D they can turn to, so don’t lose hope @zebramoon .
Good luck to both of you for your appointments tomorrow. xxx
Another with poor chemo response here but as @Jaygo says they’ve always got a back up plan and another and another!
Thanks ladies, I hope your prognosis is good despite your initial treatment being less successful. I feel let down because I was led to believe it was going well and the statistics from previous studies put the majority of patients in the full response or almost full response groups so I’m shocked and disappointed that my response was so poor. I spoke to the oncologist today and he said some people have a tumour that progresses on treatment so I’m really hoping and praying that at least mine hasn’t spread - I requested a pet scan which he’s ordered to check. I’ve been referred for a trial which I found this morning can be done nearer than where I was initially offered it (still an hour and a half away but better than driving to Bristol). I really hope we all get a full cure asap and can draw a line under all this! Not looking forward to more treatment but should be grateful it’s even an option. Hope you’re all doing well xx
How is everyone doing? I don’t have anything new to report in terms of treatment but the range of movement in my arm / shoulder is getting a lot better despite not doing the exercises as often as I should. Thinking of you all xx
Hiya @zebramoon lovely to hear from you. Yes I’m getting movement back and am trying to remember to do my exercises. Day 10 post op for me and feeling great.
Just a bit of advice whilst I’m here…I haven’t been given any guidance about compression garments or when to wear them. I have had my dressing removed now (yesterday) and there is a tiny bit of seroma appearing at the left edge of the scar where my cleavage would have been. Any tips or pointers? XXX
I’m so glad you’re recovering well, was your surgery moved forward? I thought you said it was in 5 weeks time and you wouldn’t have had it yet. Did you have a drain? I’m not sure that you can do anything specifically to prevent / reduce seroma yourself. From what I’ve read it should absorb by itself but can be drained off with a needle if it’s bothering you either by the surgeon or a nurse. Using the arm more can make more fluid drain which I did notice that when I had the drain in to collect it. In terms of compression I couldn’t find any information about what to do for a mastectomy without reconstruction - that’s one of the reasons I had the implant as I thought it would be easier to buy a surgical bra. Before that I was considering getting a top surgery compression vest and cutting a panel out for the untreated boob to not get compressed (but you might want to ask about that). I had lipo years ago and was told it’s important to use compression to help the skin stick onto whatever is now underneath it and I’d expect that to be the case for a mastectomy too. For mine I think the post op advice is mostly about looking after the implant so it’s probably less relevant, r/breast cancer on Reddit is huge so you might find some information there or I’ve phoned the Breastcancernow nurses and the nurse was lovely, flat friends is another place you might find some information. Do you know what you’re doing next in terms of medical treatment? I’m a bit in limbo at the moment, feel ok if I lie down all the time but I’m very weak and get tired really quickly if I do anything upright. Hoping to hear back from the clinical trial asap and I’d really like to get some advice on when I should have this wisdom tooth removed as I’m not sure what to do for the best. Were you told when you could drive? I’ve been out once just to the nearest Sainsbury’s which is only 5 minutes cos if I need more than a couple of things then I also need someone to carry it!
hiya love.
I got an earlier op because I wasn’t responding to chemo so they queue jumped me to beat the rush to the lymph nodes. I’m hoping they are as clear as the ultrasound is suggesting they are.
You’ve given some really helpful advice. Thank you so much for taking the time to write. I just wanted a bit of reassurance that I was doing the right thing and it sounds like I am. I just forget to answer the sensible questions when the nurses visit. I can ring my BCN tomorrow if need be. Good to know that the seroma is likely to go of its own accord.
Because of the chemo glitch I am probably going on to Kadcyla after this but I don’t see the surgeon for another 10 days, so won’t know until I have had the PCR, but it was sounding pretty definite that I would be having KC. I was told not to drive until I felt safe to do an emergency stop…how do you do that without doing an emergency stop hahaha! Only kidding. I don’t really need to drive so I can leave it until I feel completely fine with it, or the crushing boredom drives me to it.
Yes I have been sleeping a lot as well, but that is our bodies using that time to do the healing stuff so we’re allowed! I agree carrying stuff is a bit of a bugger. I also had my first proper shower after the dressing came off…it was the weirdest sensation showering the boob region. I went to wash my boob and of course there was nothing there…I was stopping my hand at the point where my boob would have been. does that make sense? Really strange.
Thank you, you’ve reassured me. Hope you’re doing ok. Keep resting it’s important, and don’t feel guilty. xxx
Hi @Jaygo I had a mastectomy in September and still go to do that sometimes with the boob that is no longer there. I have a little chuckle to myself!! I had a seroma, it felt so strange, I could feel the fluid swooshing, the BCN checked it and no drain was needed, it just cleared on it’s own eventually. I drove after 2 weeks but BCN said I should’ve left it for 3 really. Glad you’re feeling good after it, it wasn’t as bad as I was expecting. I’ve had adjuvant chemo and found that much tougher than the surgery and recovery. Last chemo on Tuesday though which I can’t wait for then onto radiotherapy x
Hi @zebramoon and @Jaygo glad to hear you’re both healing up well from surgery, and great that you’re all able to give each other advice and reassurance, and share experiences. This forum is so wonderful! You are both fully deserving of greeting and not doing very much At all for a while, you are recovering not only from surgery, but also from the chemo before, and that really can take done time. I also feel in a bit of limbo while I wait for rads to start, but I have a date now for planning appointment , which will be next week now.
@cornwall1234 hooray for last chemo tomorrow!!! It’s such a relief finishing it!
I’ve been a bit absent from forum lately as my focus is on my partner and his probable cancer recurrence. It’s looking fairly possible that they never removed all the tumour in the first place and the biopsy gave a false negative, which would be a bit shit. But unlike us he has no lovely BCNs to call on and nobody will give us any info or meet with us. Think we will have to get PALS involved if we don’t hear something soon 
I’m so sorry to read that. I really hope you get some answers soon. Definitely get onto PALS, it does make things happen, or at least it does in my trust x
Keeping everything crossed for both you and your partner @nib32 xxx
hi @whataloadof how are things going for you? I think it may be your last chemo today? If so, hooray! and hope you got your picc line out!!! ?
You recommended Vicky fox yoga classes to me before, and I’ve been trying to book onto a class but i can’t for the life of me work out how to do it! I can click on a button that says ‘book now’, but then it needs my account password and i cant find anywhere to regsiter/set up an account!! Don’t suppose you can remember how you did it? no worries if not, and I’m sure you’ve gt plenty of other stuff to deal with!! sending all my best xx
@nib32 Hello! Finished indeed!!! & picc out with the help of a few deep guttural breaths! Relief & a little excitement before I go down the pain drain for a few days! Saving my celebrations for when I finish radio which should be just before my birthday in May as I’m redoing my 50th year which seems reasonable in the circumstances!
Try this link for Vicky https://momence.com/u/vickyfox-yoga
then click “book now” for your chosen class. Then it asks you to fill in 4 questions & then you can use the price scale to pay what you can-lowest is £4 a class. The bottom button “purchase drop-in” looks like it doesn’t progress but it does!
You may need to setup a Momence account if you don’t have once-I definitely had one previously as my Pilates place uses it so a long time since I did that but do let me know if I can help if you don’t get through?
Hope that you are feeling well? Xx
Hooray and congratulations for finishing!!! Im feeling ok, slowly getting more energy and feeling more like myself again! Waiting to start radiotherapy, hopefully fairly soon. whats next fro you?
thanks fro that link, I’m so confused, would love to blame chemo brain but not sure I still can! I seem to have now booked a class with HOME/ Mindbody by following link on Vicky Fox’s website website, but i think it might be an in person rather than online class, although it said it was both…. Very confusing. The link you have sent looks more straightforward, so I’ll try that! xx
@nib32 We will get you into the lovely classes! Honestly just message me if it still doesn’t seem right.
Radiotherapy next for me-mastectomy & node clearance was done back in October. 15 days for me.
Great to hear your energy is returning-I’m dreaming of that. Was ready to do a swap today-here’s your picc line back please can I get my hair back now?! Wishful thinking! Went out for a bit on Saturday-unusual since this started…Sunday could barely get out of bed! So a long way to go I think for me x
Yeah, id love to have my hair back! No idea how long it will take really. I can’t stand wearing the wig, though. I have a little tufty bit of hair at the front that I decided to keep, and then shaved the rest off. I’ve been brave lately and just whipped my hat off in cafes when it’s too warm, determined to style it out! I still get sudden bouts of fatigue hitting me. I’m ok in the day when doing things, but I sit down to watch tv and find myself falling asleep almost immediately!!! It all takes time, but we’ll get there!! Xx
@whataloadof and @nib32 I really miss my hair! It’s starting to go quite fluffy but I still have a few very bald patches, and its starting to get warmer with the head scarf.
I keep longingly looking at photos of me last year, just so sad how much has changed in under a year.
Annoyingly I noticed yesterday my armpits are getting the fluff now, why couldn’t that have stayed away! Lol
I am nearly 7 weeks since my last chemo and i have defo noticed a change in my tiredness, i managed a 3 mile walk last week and no nap. And my concentration at work is much better this week! But still got some tingling in my feet when I do long walks, blood from nose. We will get there 
That’s brilliant you’re doing that. My straight up thin spikes that have survived chemo probably need shaving down as they are a bit ridiculous & then I can start at least with an even baldness. I’m hoping for a full head covering before a music festival in August as don’t see me faffing with a wig while camping?! I’ve a feeling it’s going to come back fully white but it will still be very welcome.
& indeed one day at a time is all we can do but goodness it makes me very reluctant to plan anything with people as who knows if that will be a day I can manage when I get to it xx
My sister came to chemo with me yesterday & was talking about her hair & all I could say was I’d like some-can I have yours?! Of course like you’re saying looking back…my hair was glorious long and wavy just before all this & I looked a picture of health so couldn’t be further from the bald, spotty, grey eye bags, no eyebrows, no eyelashes creature that greets me in the mirror at the moment. But I figure if I keep eating well rebuilding myself is possible (ignoring hair thinning impact of all the long term tablets!). We’ve just done something really hard so I’d say a 3 mile walk already is just brilliant. Now my troublesome picc is finally out the chubby dog is going to be getting his steps in as I try to get some stamina back as well lovely though it is being completely winded just walking up my stairs! Welcome spring & walks being lovely again xx
I know exactly what you mean. Every word of this resonates. I am on a chemo break atm but am dying to be rid of my PICC. I’m trying to look beyond the grey, spotty, bald, wrinkly face and fat body and am trying to see the survivor within, the fighter, the fierce bitch who won’t take no for an answer. Am I succeeding? Not really, but at least it is worth a try.
We are glorious now, but we are used to a different packaging. That packaging will return…maybe a different version, but we will find our look and we will feel glorious again. What is the Festy you’re going to? Bippety boppety hats are the order of the day at festys as are novelty wigs, so you can be extra playful with your look…and no hassles with getting good hair if you’re camping. Win win! xxx