feedback after hol in hot climate

2 weeks in Mexico, a wonderful break, but, LO flared up on plane out. Skin got very dry during 10 hr flight so use cream. Had to put sleeve on to contain the swelling during flight and flight attendent asked me what was wrong, see it’s so dam noticable.

Had a few issues during the 2 weeks. def worse when out in heat all day, days spent in shade or partly in air con rooms were ok. Noticed bad arm and hand sweated more than other, and felt a bit like needles when sweat was pushing through pores.

Wore sleeve on one occasion during night but was drenched in sweat so only wore it after that during day in cool room.

Had one bad day when I did a lot of swimming and walking on a trip out. Then had a fall, and hand really swelled up.

Got bitten a few times, not on bad arm right up until last day when got loads! Wore a bug repleant but this didn’t seem to work over there (Deet based as recommended)Touch wood no side effects from bites on bad arm.

Back home now and hand still got same swelling as on hol. Some pain around thumb joint and wrist. Also got 2 badly swollen feet during flight back which were achy and still not gone completely down, any connection?

Hope the info is useful and PM me if you want more info.

Irene

ps, the new sleeves didn’t come in time so now been on order a mth

Hi Irene

Thanks for posting all this.

Sorry to hear that your arm had lots of ups and downs when you were there - hope it’s settling a bit more now that you are back in the UK.

Re: the puffy feet. Could it be an indication that your lymphatic system is not as robust as some and that it reacts unfavourably to changes in air pressure, such as when flying? I’ve often wondered if a tendency to swollen feet and ankles (which I don’t get) could be used as some kind of an early warning indicator for devloping arm lymphoedema after bc.

I think it’s terrible that your sleeves didn’t turn up before you left. Whatever took them so long to deliver them - were they made to measure or something?

Yes, don’t you just hate the stewardess’s ‘what-have-you-done-to-your-arm?’ question. I also loathe the ‘how-long-will-you-have-to-wear-that-for?’ and the ‘can’t-they-cure-it-then?’…

Hey-ho…glad to see you back, Irene

X

S

Hi Irene

Sorry you had such problems on your holiday. I didnt notice much on a recent holiday in Greece but before that visited Malta for a week where I was doing a lot of walking in heat of day and arm swelled up. It also swelled up in heat here and doesnt seem to have gone down much since. I too get the sweating with the sleeve and havent really found an answere to this. If I go to the gym and wear the sleeve as advised when exercising I come back and the sleeve is soaking wet! Running cold water over the arm when hot does seem to make a bit of difference. Has anyone else heard/tried this? Also I have noticed I seem to be suffering from fluid retention generally. I cannot now get on shoes and rings on the fingers of the other hand that previous to bc I could despite losing some weight. Any ideas on this. I am on Herceptin and Arimidex but fluid retention doesnt seem to be mentioned as a side effect of either.

Interesting points re fluid retention generally.

Went swimming today, first time since back off hol. and noticed my hand more swollen again, so it looks like this may be an indicator as it’s not exactly hot here at the mo is it!

My ankles took 2 weeks for swelling to go down and were very stiff and achy. I have never had swollen ankles before, not even during pregnancy, so will mention when see doc next. Thumb joint pain less but wrist now aching.

Still dont have the sleeve. Was told by pharmacy that it was a made to order one but my LO nurse never mentioned that so wondering if it is just an excuse. Will use a dif pharmacy next time.

Irene

Hi Irene

I think the situation about your sleeve is such a disgrace and simply not good enough.

It really shouldn’t take more than a week - ten days. My lymphoedema therapist could fax an order to Germany (for Haddenhams sleeves) and the sleeves would arrive in the UK less than a fortnight later.

I’m beginnning to suspect that in your case, someone in the supply chain hasn’t paid a bill (could be the PCT, or the pharmacy) and a stop has been put on new orders until the account is settled.

Hope the aching improves.

X

S

Finally got the sleeve and it is much more comfortable, shame it took so long! Gloves too big though, rubbish ay!

Hi Irene - glad you got the sleeve and are more comfortable, but the gloves???

Is you hand changing shape all the time?

X

S

My hand used to ocasionally get bigger. Then on hol it remained bigger and hasn’t gone down completely since. The gloves are def not made to measure, they come in size 1, 2, 3 etc, not sure about the sleeve.

Aching has improved as been at home a lot and wearing sleeve and gauntlet. Hate the gloves as a dif shade and very noticable. Still hate wearing sleeve etc outside.

Irene