Hi all
Flying on a plane soon for the first time since DX, not with arms LOL and have been told by the physio chap that I should wear an arm sleeve just for the journey.
I don’t have lymphoedema so is this essential, or just a precaution?
Bahons, as a fellow Frenchie, can we get a prescription from the GP for these or just go to a pharmacy and buy? I expect its something we need to be measured for?
Out of interest, how do these sleeves help please?
Thanks
Hi Peacock
It sounds as tho’ you have an excellent physio who is really on the ball as far as preventative measures are concerned.
It’s the reduced cabin pressure that is the risk; a sleeve would help to compensate for some of that lost pressure and to reduce the load on your vulnerable lymphatics, by encouraging the return of the lymph from the arm.
I understand that the risk is thought to be minimal on short haul flights, but I think it’s still worth being careful. Straws, camels, and all that…plus you’ll have a sleeve to use for any future flights or at any other time if your arm gets a bit achey - such as gardening, shopping.
Yes, here you can go to your GP for a prescription which you then take to a pharmacie. There should be someone there(if not everyone) who can take the measurements. They don’t seem to do off-the-shelf - mine have always been made-to-measure by a company called Thuasne. The top-up charge is just under 6 euros per sleeve. My last lot took 5 days to come - they are very quick.
Hope this helps a bit…
X
S
Thanks for that Bahons, I need to see my GP anyway (still coughing and breathless) so might as well as for one.
Your info was a great help
XX
Will be going on a long haul flight end of October. Can we get these sleeves in the uk on prescription and if so can we just go to our GPs to get the prescription of do we have to contact the BCN/ Consultants?
Surprised this wasnt mentioned at my last check up appointment as they know I was going on a long haul flight (had to tell them due to radiotherapy sessions coming up).
Anyone know if we can get lympheodema sleeves via prescription from our GPS in the uk?
TIA
Hi gocat
I got mine from my lymphoedema nurse. You have to be specially measured for them. I only got mine because I have (thankfully mild) lymphoedema. peacock is in France. I don’t think they routinely give them out in the UK unless you have it - not how it should be but there it is.
I got a prescription and the chemist ordered it, it took about a week to arrive.
Have a great holiday!
Kinden
x
Peacock,
PLease do see your GP. That coughing and breathlessness has been going on long enough from what you’ve posted.
Hugs
Kinden
xx
Hi all
Agree with Kinden, Peacock - we’re worried about your cough. Hope you’re feeling better, yersel’ now Kinden.
Have bumped a thread ‘4 nodes removed - what’s the lymphoedema risk?’ for gocat. Lopk for Nonny’s post on Page 2.
If you lose track of the thread, type ‘Activa’ in the forums search box and you will be able to find a thread that tells you how to get a prophylactic sleeve if bcn/gp won’t help.
Kinden is right - they should be issued as a preventative measure, but very rarely are.
Off to the physio in a mo’, but will try to repost on here with those ‘Activa’ sleeve details later.
X to all
S
Nonny (hope you don’t mind me copying it and reposting it here, Nonny) wrote this a little while ago about Activa sleeves on another lymphoedema thread:
‘Just thought I’d jump in on this one. I had a bilateral mastectomy and full amillary clearance on the right side followed by radiotherapy on that side including the axilla. I asked my Breast Care Nurse about lymphoedema and she gave me the name ‘Activa Support’ which I looked up on the Internet. I had read advice about wearing a support sleeve when flying and when doing activities such as ironing, lifting and gardening. Having had Chemotherapy I was already at a higher risk of DVT so always wore travel socks as I do a lot of flying (internal as well as Europe, not long haul) I thought it would be a good idea to get fitted. I saw my GP and he agreed with me and referred me to our Lymphoedema Clinic where I was told they did not supply sleeves as a preventative measure, you have to wait until you have already developed lymphoedema! So I got measured (you can download the instructions of how to take measurements and the sizes and types of sleeves from Activa website) and purchased my own sleeve from Lloyds Chemist, £28.68 I think it was. I don’t want lymphoedema and will do all I can to prevent it.
Hope this will help some of you who are wondering what they can do for themselves’.
Also, a good private lymphoedema therapist can measure you and order sleeves for you and you should have a resonable choice of brands that way.
There is also mail order via the internet. You’ll have to google, of course, but Juzo might be a good place to start (lymphdevas, too - altho they tend to specialise in colured sleeves). Also, the new lymphoedema website ‘stepup-speakout’ dot org has details of sleeve manufacturers.
Hope this helps…
X to all
S
Hi
Just want to add something. I went on a celebratory trip to Cuba earlier this year after spending all last year dealing the this crappy disease. Went to see my BCN for a chat before I went and she told me I should wear flight socks, but said nothing about my arm. Coincidence or not, but soon after I came back I developed lymphodaema. I am so cross about the lack of interest at first, and it took ages for me to get sleeves etc. 4 months on and it is blighting my life, even though it is fairly mild. I now have frozen shoulder. Clothes don’t fit, I have had to wear a hot sleeve all summer, and still have to. I could rant forever - sorry! Anyway, the message I would give is go and get a sleeve as a preventative measure before a long haul flight. By the way, I had 6 nodes removed.
Hi rebecca, all
Rant all you like!
I’m sorry to hear you’ve now got the big L. I personally think that was totally c**p ‘advice’ from your bcn.
Flying, especially long-haul, is a known risk factor for lymphoedema.
So is heat, so your arm might not have liked Cuba much, either.
Your bcn should be aware of these things. If she isn’t, she shouldn’t be giving out advice to bc patients about their lymphoedema risk!
Sorry to hear too, that you had to wait ages for sleeves. There’s no excuse for it at all; the reason is torturous NHS ordering/admin procedures and their reluctance to pay their bills promptly.
You’re right; it’s a permanent, painful and visible blight on our lives that worsens when left untreated. Getting the medical profession to understand that and help us to prevent and control it properly and promptly is very, very difficult. As the old saying goes ‘they need to walk a mile in our shoes’.
Take care, all
X
S
Hi
Just to add to what others have said - I had WLE last year, 21 nodes removed, chemo and rads and finished all my treatment in December. I too went to Cuba in May this year as a celebratory holiday and on mentioning this to my BCN at a routine appointment she recommended a sleeve as a precaution during the flight and also flight socks as I am on Tamoxifen. She got the lymphedema nurse to measure my arm and fit a sleeve that day. Although I didn’t find it the most comfortable of things I wore it religiously on the outward and inbound flights and returned home having suffered no problems other than my arm feeling slightly “heavy” when we arrived in Cuba. I felt it had swollen slightly although my OH said he couldn’t see a difference, so I was careful to do the exercises I had been given and after a couple of days the sensation disappeared. Had it not been for the thoroughness of my BCN who also provided me with some mini emollient washes and moisturisers for the arm whilst on holiday, I do wonder if I might have developed full blown lymphodoema, and I will always be grateful for her diligence
Love Julie
PS Rebecca what did you think of Cuba??
Hi again all
Yes, crap advice, but this is where this forum is great. If someone reads it and takes heed before a celebratory holiday… I plan to have a real rant to my breast surgeon next time I see him… grrr
Julie - I loved Cuba! We did Havana (for us) and Varadero for the children and a rest for us. I am a Spanish teacher and for some reason have always wanted to go there. How did you find it?
Love
R
x