Booleywooley1 why don’t you ask to be referred to the royal Marsden in London. They are cancer specialists. If not near there there is probably somewhere equivalently specialist near you. You don’t need to pay out for a second opinion. I have been referred there for a second opinion. Awaiting my appointment.
Xx
Very excited to report that I wore a bra (and an underwired one, too!) for a few hours today!! My skin is healing really well and I bought a lighter weighted foam prosthesis which is more comfortable to wear at the moment than my silicone foob. Another bit of my life reclaimed 
Hope everyone else is feeling good too xxx
Good news Tat! I finished my rads early Feb and while everything else is getting back to normal, I’m still wearing my post-surgery bras as can’t quite face an underwired one yet…perhaps I will give it a go!! X
Tat can I ask where you bought foam one I dont think I will ever get on with a silicone one ( havent had MX yet) I just think itll bug me I got a knitted knocker but its bright coliurs so there will be times when I might not want a bright green with blue & red stripes foob
Hmm, yes, I can see why a bright green, red and blue knitted knocker might stand out!! A friend knitted me a knocker before my mx (complete with a Rudolph cover as it was near Christmas!) but I haven’t used it, but only because the shape doesn’t work for me. I was fitted for my silicone foob 7 weeks after surgery and it was fine to wear. Until then I had either worn a camisole with support shelf or the softie the BCN gave me when I left hospital. I hated the softie as the seams are on the outside and it rubbed on my skin. They are also not weighted at all, for obvious reasons, and just didn’t look right, but with a scarf, it did the job on the few occasions I needed it and while I was waiting for my fitting (Christmas and new year slowed everything down).
During the fitting I tried a few different types and went for a lighter silicone as it felt more comfortable and gave the best shape. You might be surprised by the silicone foobs that are available, I know I was. I bought a weighted foam one from that well known online retailer on the in mastectomy clothing and accessories (if that’s too secret squirrel for you I can PM you!). We are going to a wedding in Corfu in August and I do a lot of sweaty exercise and dog walking and wanted a foob that would be more comfortable to wear in warm conditions and lighter still than my silicone. As it happens, the foam foob is more comfortable at the moment while I’m recovering from rads. You might be able to get a weighted foam foob from your hospital, I don’t know if they are available on the NHS. All I would say is the fitter should ask you about your lifestyle and give you the opportunity to try different ones before you make a decision. Don’t allow yourself to be rushed at the appointment. I learned to wear a stretchy vest top under my shirt to all my appointments to keep some modesty and dignity and it really helped to pull that up over the bra during my fitting to be able to see how symmetrical my boob and foob were.
That’s a long reply, hope some of it helps! xx
Great news Tat …every inch of dignity reclaimed is worth it’s weight in gold & is one more step back to reality. Have a good weekend xx
Thanks Bibi How are you getting on? xx
Thanks tat x glad you are getting along with it and your feeling a bit better xx will have a look, and thanks for the tip re vest if it can stand up to a tight top it’ll look ok under most things
Enjoy corfu
Jen x
Good to hear from folks and to hear on the whole we’re doing well! AC, I’m still in the overthinking phase too. I also still have days where I find myself in tears completely out of the blue. But on the whole I’m ok. Hoping to go back to work next month. AC, re the tablets… there’s some info here about tamoxifen and dcis breastcancercare.org.uk/information-support/facing-breast-cancer/diagnosed-breast-cancer/primary-breast-cancer/ductal-carcinoma-in-situ-dcis/treating-dcis. The other tablet for oestrogen positive cancers is letrozole and that’s for post menopausal women. Am sure the bcc nurses wld have more info. I’ve been signed off by breast surgeon and chemo onc. Yearly mammograms on gd boob and ultrasound on recon. Seeing plastic surgeon on Tuesday and being assessed for manual lymphatic drainage on Friday. Love to all.xx
AC I was told 1st mammo will be ‘when I feel ready for it’ i.e. When i feel my boob is squashable without pain. I am supposed to be going onto that open access thing at CUH too, but i think I’ll stick to the Marsden because you get same day results rather than waiting, anxiously I expect, for two weeks for a letter to drop through the door. I haven’t had much pain, but did overdo it at golf a couple of weeks ago & had the same experience as you. It was very sore & took 8-10 days to settle & quite scared me, but I’m fine again now. Oddly did tennis & yoga and was perfectly OK. I am a little scared to do a full swing again at golf just in case I wrench myself again, but it has to happen sometime. I didn’t wait the full 4 weeks, so could have been that. If you are worrying a lot, I have just read a great book called Cancer Survivor’s Companion, which I would thoroughly recommend. If you are worrying about hormone tabs call Jane or Tina at CUH. I’m sure they would have prescribed them if you needed them, but never any harm double checking with the NHS as they are so overworked things do slip through the cracks.
Hi Tat I’m very well thanks. Are you off on hols??? If so, I am very jealous. I have booked a night at The Shard for our anniversary in a couple of weeks as M has never been & I thought he deserved a little treat.
Hi Brave hope you are well. Actually made it back into the baseline last week with no ill effects, so quite encouraged by that after my ball in the face experience the first time xx
Hi all. Great to hear that we are all doing well most of the time and moving forward, even if that involves a step back at times.
The way my skin has healed has amazed me, given what it went through and my age! I’m still using Polymem overnight and in the evenings if I’m uncomfortable, but just using coconut oil otherwise (my usual moisturiser) and Aquaphor if I feel I need a bit more of a barrier. We had a weekend on the coast after Easter, the longest walk I did was 7 miles, distance no problem but I was really puffing up the hills! I was back at the gym for the first time this morning for my fav class and it felt goooood!! Sorry you had problems while playing golf, Bibi, and hope everything is healing well now. Being able to do the things you love is so important in the emotional healing process, I think. How is your hair coming along? Happy anniversary for a couple of weeks’ time and enjoy your night away 
I hope you enjoy being back at school, AC. I know I am in better shape mentally when I am busy and able to focus on other things - the exact opposite of the ‘mindfulness’ approach that seems to be so helpful for so many!
Brave, seems you still have lots to get through - really hope the MLD gives you relief. Has your skin and wound healed completely now?
JenJen, one more thing you might find helpful - just remembered after I wore a bra to do my supermarket shopping this afternoon (I’ve relied on a padded coat to hide my monoboobness until now!). I forgot to put my silk square between my skin and bra and I was quite uncomfortable. I started using silk between my clothes and skin after surgery (just a bit of silk lining material cut into rectangles and folded over to cover my sore bits), it was the only thing that made clothes wearable for a while. Do you have a date for your surgery?
Lovely to catch up with everyone’s news Take care xx
Tat so pleased you’re healing so well … Our bodies are amazing aren’t they? I really found that out during chemo. I’m impressed with your walk of 7 miles!! Off to play golf again this morning … Not sure whether to wait another week or risk another wrench…
AC Jane is such a wonderful human being. I felt very blessed to have had her steering me through the nightmare immediately after my diagnosis. I just e-mailed her my questions & she responded when she had a free moment, usually end of the day. Is Jen the blond one? She was also nice, but Jane was my main one. I suggested that book because it has a really great chapter on controlling worrying & is an easy read. It also has a good one on body image which has helped me accept that short grey hair has replaced my lovely (bottle) blond Bob. For some reason my hair has been a real Achilles heel for me & the counsellor thought it represented my acceptance of the whole ordeal. Not sure I’m that deep, but I have ‘slayed the dragon’ now & faced up to it & feel a lot better for doing so. You know I had never read a self help book before this ordeal & now I have read loads. I am doing the China study diet, which is vegan + fish twice a week. To come clean I did not eat meat before, so the only change for me is no dairy/eggs. Personally, I think these lifestyle changes could make a big difference, but I also understand people who just want to enjoy their lives & eat what they like. I’m sure that approach has psychological advantages too. xx
Hi tat
Hope you are doing ok.
Just dropped in to say thanks fo pm. I tried to reply but struggling with a poorly phone at the moment. I will reply when I can get to my laptop.
Sending hugs
Jan x
Hi lovely ladies Busy week last week helping my parents move house and, now I can wear a bra for a decent amount of time, catching up with friends!! Happy days
Bibi, I think your counsellor’s comment about your hair is interesting… the whole hat/scarf thing is just so visible and labels you as a cancer patient which could be why it’s such a hard thing to accept? I was at my GP surgery on Friday and a very young woman came out of my doctor’s room and waited for the nurse. She was wearing a headscarf, so obviously going through chemo, and had a yellowy/grey pallor and was clearly not at all well. I felt so cross with the world that she has to go through cancer treatment at such a young age 
Hope you get your follow on options clarified, AC and feel comfortable with what’s being recommended.
Jan, lovely to hear from you. How are you getting on? You must be halfway through your chemo marathon now? I do hope you are coping OK with all the indignities and side effects
Saw my sarcoma consultant today and had the usual discussion about angiosarcoma not being a good cancer to have and especially with the size, number of mitoses and the length of time it had been there… He did give me a crumb of hope, though, in that no local recurrence since surgery or mets in the 20 months or so I have been aware of the tumour is positive news. I’ll take that!
Happy Monday everyone xxx
Hi All
Tat x great news from cons hope it continues that way. Dont have exact date for surgery yet but sew cons 1st week of May which is 5 weeks post chemo so expect to be whipped in v soon after that. Thanks for tip re silk have some old scarves I could use but off to fabric shop today for some ribbon as all my summer hats are too loose on my head as no hair to help so going to tighten them up a bit with some new pretty ribbons will pick up some fabric too x
Bibi hope you are well fab news re tennis x
Hugs to anyone I missed xx
Jen
Tat good news, I know with BC the longer you get without recurrence, the better your chances. Long may it continue. Good luck for your op, Jen Jen xx
Hi ladies, just checking in to see how you all are. Hoping no news is good news, but would like to know how you are getting on with the MLD, Brave; AC about deciding on further treatment options and, of course, whether you can swing a golf club without pain yet, Bibi! Jen, did you get a date for your op yet?
Had a fab couple of weeks meeting up with friends, eating out and generally doing life! The lovely spring weather and walks in bluebell woods are good for the soul, so not stressing too much about my pelvic MRI tomorrow. In fact, the biggest shock was why just the pelvis? I meant to call the onc’s secretary, but kept myself busy so effectively I never actually did…! Will find out next Friday when I see onc and make the point that things like that are scary!
Hugs to all, tat xxx
Brave, so good to hear from you! So pleased you are easing back into work - a bit more of you back Thanks for the PM too 
Your MLD sessions sound ‘interesting’!! Another strange life experience to chalk up to the lovely bc, huh? Great news that they think they can reduce the lymphoedema and you should be able to manage it yourself, though.
MRI was fine, late of course, but lovely, chatty radiographers. Results on Friday when I see my onc again, so another Friday afternoon at my second home Glorious weather here and so warm I am seriously considering getting my legs out!
Happy Friday to all xx
Hi all you lovely ladies How nice to hear everyone is feeling chirpy. Brave that MLD sounds quite an experience. Hope it works. I’ve had a bit of a disaster since we last chatted in that Tamoxifen has made me lose a huge amount of hair all over 2-3 days … NOOOoooo!!! you can hear me screaming from here. It’s so bad I have come off the tabs for 3 months to allow my hair time to regenerate (but hopefully not the BC). The whole situation is far from ideal aesthetically, psychologically & medically. I somehow feel a lot more exposed to recurrence now, having got myself into a place where I felt it wasn’t coming back. Oh dear. Tat all the best for your scan results. I have my first mammo booked in a few weeks & NOT looking forward to sticking my poor boob in the mangle again, after all it’s been through in the last 11 months. To top it all off my smear appt has arrived this week… Talk about top & tail! For some reason read the leaflet (never have before) & it says abnormalities more likely after taking immunosuppressant drugs. It’s literally never ending. Thank God the sun is shining or I think I would just crawl under my duvet & stay there. Love to all xxx
Oh Bibi, that’s just not fair to lose your hair again on Tamoxifen Like you say, when will it end? Hope your drug ‘holiday’ does the trick and you recover what you’ve lost. I totally agree about the weather and sun - everyone is smiling and more relaxed. Glorious! Are you back on the golf course now?
There must be something happening in the NHS re ‘tops and tails’ because I had a mammogram and smear test in the same week last year before stepping on the cancer not-so-merry-go-round! At my surgery, they used to have pics of Brad Pitt and Johnny Depp on the ceiling above the examination bed in the nurse’s room. Definitely lightened my mood when I assumed the position
Sorry you haven’t had a follow up appt yet AC - have you rung your onc’s secretary to clarify when to expect it? Glad you’ve found a good support group. Looks like a group of sarcoma patients and supporters are going to meet up in the midlands - there’s no support group here at all, so we may end up starting one. I’ve found lots of support on this forum, but sarcomas come with particular issues and, inevitably, the need to make contact is very strong. You should book that holiday, AC, and indulge in a bit of ‘you’ time. The places that springs to mind immediately for a city and seaside breaks with good train connections are Edinburgh and Exeter. Hope you manage to sort something out.
Take care everyone xx