You are very welcome @cherryblossom1 . You will be more knowledgeable than many of us soon. You are navigating a double mastectomy. That is huge. One strong lady. Xxx huge respect for you.
Re VShaped pillow. I second that. The only way I can cope on my back is by using the Dunelm pillows. Like you I jam it round me to stop me moving. It was a life saver when I had the drain in. Like you I added extra pillows to the side to rest my arm on, and to keep it away from my scar. I nestled the bottle inbetween the pillows, out of the way.
It was like sleeping with a baby
Re side sleeping with them. I use mine now, to rest my R arm on if I am sleeping on my left side (only just been able to do this recently). It takes the pressure off my mastectomy scar/seroma with my right arm. Otherwise my arm was too heavy and in the way.
Useless at explaining this. . So one side of the V is supporting your head, whilst the other side sits against your body, rather than just shoulder/arm. Effectively it becomes more like an L shape. You pull out the V a little bit.
I hug it like a Teddy Bear effectively with my left arm underneath it. Right arm on top.
Dunelm use to sell a longer side pillow but sadly they stopped selling it last year. . So I was told. Pregnant women used it to support their baby bump, but anyone could use them. But you can still buy them online.
You make sure you rest and pamper yourself. I think you are amazing. Big hug and love sent your way. Xxx
Heres to more wonderful sleepful nights. We surely need them.
I am so very pleased for you. As outlined in a previous post on this thread i too had a double msx by choice.
Whilst generally a double msx is not routinely offered. Contralateral msx (when one breast is healthy) is possible but your multidisciplinary team must be support of it and convinced its in your best interest.
My surgeon offered it but I had to have a routine psychology assessment so that they could be convinced that I would not regret the decision.
I do not regret the decision. I am very happy flat.
Sending lots of healing fibes. Big hugs. Anna x
ps. Note I contacted the Flame study and they informed me that they had an overwhelming response to the study and have all the participants that they need now. So hopefully we will see balancing surgery offered to those that want in future.
Great news about Flame - hopefully leading to more women being free to choose in the future!!! I think it is SO important.
I was initially talked into an outcome I didn’t want by a consultant who was male. The consultant who later made the outcome I really wanted happen, was female, and I wonder if the gender difference led to a different outlook?
Just thought I’d let you know that I was offered and took bilateral mastectomy two years ago (without genetic abnormalities) so it is possible.
Due to tumour size, node involvement and HER2+ I had six months chemo before surgery, so had plenty of time to chew over surgery options, which in retrospect was a major factor in coming to terms with things.
My healthy breast was 38FF so I would be have been very lopsided with SMX. I was always really concerned about the lack of symmetry and I kept mentioning it at appointments. I knew that if I had reconstruction only an implant would do, because the plastic surgeon I consulted said that (thanks to severe chemo weight loss) I did not have enough fat in the right place for a good DIEP. Regardless, any reconstruction would also involve a large reduction to the good side. I was also unsure of retaining symmetry over the years with a unilateral implant. So my conclusion was that if we have to mess with the good side, I want flat symmetry.
Also, my risk of recurrence is high and I did not want to face the possibility of dealing with a recurrence while still on the reconstruction ‘treadmill’, because I knew it would take at least a couple of surgeries, at the mercy of waiting lists.
I had a psychology appointment which was fine, and the DMX went very smoothly and I am generally pleased with the surgery results.
I mostly go flat, and use boosts to fill out more fitted clothes when necessary. I’m very happy with my decision. I’m also taking part in the FLAME study.
Flat and fabulous indeed Anna @anna_x51 I only wish I could have gone down the bi lateral route. I won’t hesitate to have the left one of if that plays up though. xx
I was never told about my Trusts Prosthetics Clinic. Someone mentioned theirs on one of these forum post.
Our of curiosity I checked my Trust Online…..YES they had a Clinic.
So I booked myself in for an appointment as I needed 30mins with a lovely lady, who tried Prosthetics until one was right. They had shelves loads of them.
I came home with a lovely soft prosthetic for day use and a swimming one.
The lady stressed:
Make a note of the date as in 2 yrs I am entitled to a new FREE one.
If my Prosthetic is damaged, or I lose/gain weight, I can get a new FREE one.
I also get a FREE bra.
She emphasised Trusts NOT contacting us about these FREE options. So WE have to be Pro Active.
I am so grateful to those who shared their information on this Forum. Without these discussions, I would never have known this Clinic was available.
So my advice, ask ask ask and make sure you get your FREEBIE.
Mine is really high quality. The Lady was so attentive. She matched me up nearly perfectly.
That’s great news @poppy261 and I’m realising how lucky I am with my Trust as this was offered to me without me needing to ask (didn’t get offered a bra though). I’m glad you’re happy with your new Betty Boob. I got mine last week too. Enjoy!
I’m flat on the left after my SMX in December. I have been making do with the cheap cushiony thing given to me after surgery. I’m undecided on reconstruction yet, but I had a consultation a week ago with Geraldine from Betty & Belle. This was an in-person thing which I paid for, I didn’t actually think about contacting my trust to see what they offered.
But I can say Geraldine provided an amazing experience. It was an in-person consultation that lasted almost 1hr 30. She helped size me for a bra - first time I’d done that before actually! And we went through a load of different breast forms, being able to try them on in person was so important. In the end I settled on a quite expensive contact form from Amoena, but it’s not something I would have been confident buying online without knowing how it fit.
It’s a little more hit and miss now I have it home, it felt perfect at the consultation, but it still feels so much more comfortable and looks better than the cushion. It weighs a lot as it’s silicone, but that makes it feel more natural.
My plan is to see how I feel with a ‘proper’ breast form now, before I make a decision later in the year about reconstruction. It feels worth it to spend £200 now if it helps give me a better idea - and it’s more comfortable in the meantime.
I highly recommend looking beyond just the basic they give you after surgery!
I am so glad some Trusts actually invite you. Perhaps its a cost thing that they “dont actively encourage, yet do advertise a positive image”.
The amazing thing was the day Prosthetic was an Amoene and the swim one was a Truelife. Both the expensive ones.
All the Prosthetics generally on offer were far beyond what I would have ever imagined. Really good quality. I tried on at least 4 different makes. All top end. Beautiful.
The lady was so attentive. We didnt have 1.5 hrs, but 30mins was fine. I would have taken the first one. It was sooo much better than my Softie. . But they got even better as she went through the styles. Matching as close to my remaining breast as she could. So dont assume they may only have sub standard. Even if they are, not as good in different Trust…. Free is free and worth having.
I cant actually thank the Trust enough for providing such lovely ones and a bra. It truly made my day. .
M&S sell numerous bras that generally have pockets. But they also have a mastectomy range as well.
Primark, Asda etc do pocketed bras if you look. But some are online in their mastectomy ranges.
Obviously there are loads OnLine. Perhaps other lovely ladies will know these better than me.
I did buy my pocketed, post op, front fastener, from Nicola Jane. (I can ring and order over the phone.) Which I love, as I can wear it with a prosthetic, or go completely flat (which I often do). Its a bamboo stretch fabric made by Cancer Research. I love it as there is no annoying empty cup if I dont use a prosthetic. It stays flat, or stretches out. Its supa soft as well. But may not be supportive enough to cope with a weighted prosthetic. Id have to see.
The company who did my Trusts day Prosthetic, also focus solely on mastectomy clothing. Lots of lovely bras and a UK phone number. So im hoping they do over the phone purchases.
My FREEBIE bra comes in a couple of days, via the company that sold my Trusts Swim prosthetic, and Jaygos Prosthetic. Again I can order over the phone. Which helps a lot and their bras are lovely as well. Plus they have a wide range of sizes/cup sizes, available not just the standard 10-18.
Company Names are in my previous Posts. Cant remember them now, as I out for another Hospital appoitment, and I cant seem to scroll to my Post whilst I am typing .
Another Trulife here - a silk triangle one. If you are big busted, a full cup bra might suit you and you just slip your prosthetic in. The full cup will keep it in place.
This was suggested to me by a lady on this forum a few years ago and I have not looked back since. It was a game changer and my prosthetic looks better without having a pocket put into my bra. I did buy some of the Marks and Spencers prosthetic pouch things to keep it clean and stop my chest getting sweaty.
I have a lovely collection of full cup bras and I also have some nice underwired sport bras that look like ordinary bras - extra cupage!
You are navigating a double mastectomy. That is huge. 
One strong lady. 
Xxx huge respect for you.
. So I was told. Pregnant women used it to support their baby bump, but anyone could use them. But you can still buy them online.
and the swim one was a Truelife. Both the expensive ones. 
It truly made my day. 
