Finding clothes

Public Archive
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Hi everyone

I thought we might be able to use this thread to share tips about finding suitable clothes, doing alterations, things like that.

I’ve been advised that we cannot post links to online retailers, but I’m assuming it’s OK just to mention names, as people do on other threads.

Just to kick off, I’m a big fan of Land’s End (there’s a UK site and a US one) - lots of good quality long and three quarter sleeves (T-shirts, blouses, tunics, shirts and tops). They also do what they call a ‘relaxed fit’ for many clothes (not too tight fitting) and there are shirts and blouses in stretchy fabrics. Ditto interlock garments that are smart enough to wear to work. Land’s End can be a little pricey, but their online clearance section is definitely worth browsing from time to time for bargains.

(And no, I don’t work for them!)

Look forward to hearing about anyone else’s favourite shops and ideas.

X

S

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Hi Bahons,

Great topic and one I constantly fret over. With a mastectomy and lymphodema I’ve had to drastically change the way I dress. I saw my lymphoedema practitioner yesterday and she measured me again and I have a 31% difference in my arms now … I am so p…ed off.

Clothes - it has been trial and lots of error for me. After 3 years of lymphodema I have finally come up with some ‘Trinny and Susannah’ type rules for myself which are as follows:

3/4 length sleeves - nooooooo!
There are so many nice cardigans etc with 3/4 length sleeves - but I think to cut off mid forearm where my arm is very big is not clever as it draws the eye to that point. Similarly I like short sleeve t shirts with a fairly wide and long short sleeve rather than a little cap sleeve which is really tight on my upper arm and again draws attention to a bad area. I still like wearing sleeveless tops (maybe foolishly) as I think the tops of my shoulders and collar bones still look ok and hopefully the eye will be drawn there rather than to my arm. The best sleeveless top is a sort of halterneck with a highish neck to cover prosthesis but then cut away for the arms. I have had 2 tops this season from Coast like this and I love them. I’ve kept going into Coast since my surgery and lymphoedema because I really love their party clothes even though I can’t wear 99% of their stuff.

Suits and smart jackets - impossible!
Anything fitted like this I can’t wear as I would have to go at least 2 sizes up to get my arm in the sleeve. Luckily I don’t have to wear a suits or jacket for work and for smart nights out or weddings etc I will wear a floaty cardigan or a pashmina shawl sort of thing.

Sport
I like mountain biking though have been very lazy recently and haven’t even unpacked my bike since I got back from a lovely warm cycling hol in Spain at the end of August. In the winter normally I would wear a long sleeved thermal and a fleece and a light waterproof. However I found with my compression sleeve that my arm was too hot and the clothes were too tight. So I have hacked the right arm off all my long sleeved thermals to reduce the layers on my affected arm. It looks great - not!

Gilets and tank-tops
I have found these useful as they add warmth to me but no bulk or warmth to my arm. For work in the winter I often wear quite a loose fitting shirt but then make it neater and smarter by wearing a wool tanktop over the top. For casual wear I find a long sleeve t shirt with a fleecey gilet or a tanktop is comfortable and doesn’t draw the eye to my arm.

Blouses/shirts
I really like those crumpled scrunched up tops which you are supposed to dry twisted up. (Do you know what I mean??!) I have a couple from Per Una and they stretch over the swollen arm but still cling to my ‘normal’ arm so my silhouette is neater than having everything baggy. I also like linen shirts because they are cut looser I think - but look good like that.

Cardigans
There are some great wide-sleeved cardigans around. I have one that is a combination of a shawl and a cardigan so it has arms but then I can throw the shawl bit over my affected arm to hide it.

Bracelets
I have avoided completely but I wonder… as luckily my hand is not swollen should I try a loose bracelet to draw the eye to the best part of my arm??

I would love to hear more opinions - this is something I can’t share with anyone I know as no-one has this experience. (But I do wonder having typed this am I a little bit shallow spending all this time thinking about such things?)

love, Rowena

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Hi

My arm reduced recently from 33% to 30% first time in over a year its gone down. Like you Rowena have had mastectomy, and the only time having had this op bothers me is when looking for clothes. Having to make sure tops not too low, I always were short sleeves as cant bear anythinh long on my bad arm. It really irritates me, but some of the wide sleeved stuff is good. I hate it when i find something I really like but find its either not suitable or its uncomfortable.
Like you I wonder if i’m shallow, i do have more things to worry about (like secondaries and BRCA2as well), but I have to be suitably dressed for work and i do enjoy an odd night out.

Lynne
PS loved the tips

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Hi both

I don’t think we’re being shallow at all, discussing this issue. There are plenty of threads on these boards which discuss the temporary disfigurement of hair loss, but as far as I know, this is the only one devoted to making the best of a lifelong physical appearance problem engendered by treatment for breast cancer.

Up until bc happened to us, we were used to making decisions about what we wear based on our own personal taste and budget. Since I’ve had lymphoedema, I’ve occasionally looked in the wardrobe and realised that lots of the stuff is only there because I’ve got lymphoedema and that I wouldn’t have given it house room otherwise. Even though I’ve never had much interest in clothes, I hate having to settle for what fits or hides, rather than what I genuinely like. But we’ve all got to wear clothes, and if we can feel good about what we’ve got on, we’re going to be coping that much better, aren’t we?

Personally, I have gone for three-quarter sleeves in summer because they are cooler than long sleeved tops - I very often buy ones with a hem that I can let down further. I’ve also got coloured sleeves (black and white - think I might invest in some pink ones next year!) that match many of my three-quarter tops and make both my arms and my sleeves less noticeable (I think). I don’t know about you girls, but I don’t particularly like being quizzed about my arms, sometimes by total strangers - people can be very rude and nosy. I don’t normally go sleeveless (ie, without compression sleeves) unless it’s a very special occasion or I’m at the beach, etc.

I’ve also got a couple of kaftans - one’s a smart black and beige affair that I can jazz up with jewellry, a belt and high heels for going out. I’ve found the wide armholes and sleeves very practical.

Also, if I find anything I like that’s suitable (hard, isn’t it?), I’ll buy it in every colour they’ve got. If they only do one colour, I’ll buy several anyway and dye them.

Talking of dyeing, I tried to dye an old pair of Medi sleeves a darker shade of brown once and it didn’t really work - I don’t think there’s enough cotton in them to absorb the dye properly - they turned out ginger!

Rowena - I was really sorry to hear your arm is now 31%. Is your lymphoedema practitioner organising any treatment for you? (I’m of the opinion that just as ‘you don’t fatten a pig by weighing it’, you don’t reduce lymphoedema by measuring it…)

Look forward to hearing from you both

X

S

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Do you still not find with 3/4 sleeved tops that they cling to the compression sleeve. I do like the idea of coloured sleeves but would really like my arm reduced further before investing in more garments, especially at the minute as the one i wear now goes to my fingers. (i hate it the bl***y thing). I’m back at lymph clinic 5th Dec so fingers xd.
I’m still off work at moment with swelling in right leg (same side) as have blood clot. On tinzaparin injections which my OH seems to enjoy giving me (i cannot do it, wimp eh). Only thing i can get on my feet are slippers or trainers which is a pain. So slobbing around at moment anyway in tracksuit bottoms and t-shirts. Don’t know how long i’ll be off work for, as swelling not going down, but doing as told ie resting leg above hip height.

Take care everyone

Lynne x

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Hi Lynni and all

Sorry to hear you’ve got a swollen leg to contend with as well, now - how miserable for you.

Re the three-quarter sleeves, the tops made of linen don’t cling too much. That’s where the coloured compression sleeves come in as if they match the top it becomes hard to see where top ends and sleeve starts. I’ve decided not to buy any coloured sleeves until next summer - they’re not cheap. I’ve a hankering for pink ones - not sure why!

I know what you mean about hating the sleeves, tho’. Even Norah Batty wouldn’t have worn creations as hideous as those on her legs.

I believe I’ve even seen glittery ones for sale on an American site.

Hope your leg is better today.

X

S

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Thanks Bahons2, abit ironic my arm has reduced but the leg is increasing, cannot win!!! I wish it would go into my face to get rid of the wrinkles.

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Hi all

This is an official site:

lymphovenous-canada.ca/

If you browse it, you will discover information about an organisation called ‘sansu’, who have designed not only a handbag (with built in arm support) suitable for lymphoedema sufferers, but also some clothing, too. Well worth a look.

X

S

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Hi Bahons2

Where do you get your coloured sleeves from? I have been looking and can’t find any.

X
Nonny

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Hi Nonny - where have you been looking?

If you want black, white, chocolate brown, navy or grey-blue, Haddenhams Healthcare (based in the UK) can do these.

You can ring them up, order and pay by credit card, BUT they will also need to have your sizing and compression class confirmed by whoever you get your regualr sleeves from (or a private lymphoedema therapist who has measured you). It normally just means your lymphoedema nurse picking up the 'phone and having a quick word with them. It shouldn’t be a problem as Haddenhams ‘skintone’ sleeves are already used by the NHS and the lymphoedema nurse/clinic should be used to dealing with the company.

Other colours are more difficult to get hold off in the sense that they have to be ordered from abroad (usually the USA), but as you can order over the internet, you can usually do it all yourself.

We can’t post links to sleeve manufacturers, but try googling ‘lymphedivas’, ‘gottfried’, ‘juzo’. You may have to put ‘+ compression sleeve’ as well. ‘stepup-speakout’ is a new lymphoedema site with lots of good links to manufacturers, too. Again, you’ll have to google a bit.

Hope this helps - if you have trouble finding thses sites, post again and I’ll pm you some links.

X

S

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Bump for Irene

X

S

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Thanks everyone for your really helpful comments, at least you don’t feel so alone with the practical problems.I continue to wear short sleeved tops while wearing my sleeve and glove as I don’t think it is anything to be ashamed of. I’ve a wardrobe of lovely summer tops and don’t see why I shouldn’t wear them.It doesn’t alter the fact that I hate loathe and detest it but I want to wear whatever I wish. It’s hard enough sorting out bras and v necks after my mastectomy but as far as the sleeve is concerned I’m not bothered if it is on show.I can see it must be more difficult for those of you with more swelling and recently I have been more aware that some sleeves are tighter than they used to be so I may feel different it it gets a lot worse.
Good Luck to everyone and hopefully happier shopping xx

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Hi Ladies
I just wear what I normally would as far as long or short sleeves. I have got one of the Lymphadiva sleeves. OH bought it for my birthday. It has a grey lace pattern which looks quite glam. We just followed instructions re measuring and size. It was about £120 which included duty and tax so they are not cheap but its nice to have something a bit dressy. I am lucky as I can go days when I don’t need a sleeve as long as I don’t do anything stupid. Saving up for another posh sleeve.
Keep your chins up if you are just starting out on the lymphadema journey you do learn to manage it.
Chinook

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Hello everyone, I’m interested in this thread having recently had bilateral mx (but no node clearance so luckily no lymphoedema). I’ve been thinking about clothes a lot, because they are actually very important even though I don’t dress up very often. I’ve already spoken to a young friend of mine whose at London College of Fashion to see if she knows any design students who might help to design clothes for women who’ve had bc surgery. She thought there might be a possibility that the college could do this as a project. My idea is to look at getting some clothes made and selling them. I wouldn’t want them to be too expensive, and they’d have to fill the gap for people who want to look nice (and maybe a bit funky!) but can’t find anything other than basic, plain stuff to suit. Your tips and discussion are fantastic, how would you feel about being involved in something like that? Obviously it’s got a long way to go!
Best wishes, Lynne xx

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Hi Lynne

What a lovely idea, thank you. I’ve been wishing someone would take this up. For lymphodema, I’d like to see things with long sleeves taht are suitable for a hot summer and that are loose (ie not aimed at people with skinny arms). For me it’s not just about covering the sleeve. I tan very rapidly even just walking around and I’m worried I’m going to end up with one pale arm and one very brown one - seriously odd!

Please let us know if anything is going forward this, I’d be interested.

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Lovely, thanks Elinda. I’m going to chat to my friend Libby again, and try to get a contact at the college (she’s pretty busy, in her first year doing fashion journalism). I’m not a business type person, so have no idea how to go about it after the thinking and designing stage, but I have a few contacts who might help. Will let you know! xx