Pre holiday post

[SnazzyD]

Well, if all goes to plan, tomorrow I'm off to Rome for a cruise on Monday. Still on 18mg Pred for GCA having been on this dose for four weeks so as not to reduce too close to travel. I've got to survive 36 hours without getting an upset gut as I do when going somewhere hot. I know it is a bit negative but my nightmare is missing the boat because I'm in a Rome hospital having Pred some other way because my intestines are busy. Once on board I'll have a floating hospital below decks and jolly impressive it is too. Airport assistance booked by travel agent as advised on here.

Anyway, my planned stress free week to be ready for travel hasn't gone to plan because my gently thinning hair started to fall out with a vengeance. By Weds it was not looking good for keeping my mane by the end of the cruise. So, the tender scalp wasn't GCA on Monday, it was hair pre-fallout pain, same as I had when chemo zapped my follicles. The last few days' spoons have been spent trying to find a wig so I'm not looking bald or moth eaten as well as puffy face and panda eyed. It's not going to be comfortable in 37C but then I'm not going be doing much gadding about. I have decided to put aside my old, active, not particularly feminine, busy traveler self. Instead embrace the new and waft about looking at the sea and wear pretty frocks and sparkly shoes, driving the restaurant staff mad with my low salt, gluten free diet.

Well, it's going to be interesting and I'm a bit nervous I have to say.

[DorsetLady PMRGCAuk volunteer]

Hi SnazzyD,

Sorry your week has been rather fraught, but now the moment is here - relax, relax, relax. You've got the important things planned, so anything else doesn't matter. I'm sure you can get anything you need on board.

We all have last minute panics, but so long as you've got your passport, your paperwork, and your medicine you'll be fine! I'm sure you stomach will behave - don't give it any cause not to!

But most of all - enjoy. 💃🛳😀

[SheffieldJane]

Hi Snazzy D, I hope that you have an absolutely wonderful time! I love your attitude, you will look gorgeous! You can also make use of cleverly tied turbans and floppy sun hats. You seem to have planned for every eventuality and have your safety nets in place. I bet you won't need any of it. I wonder if there is a clever hairdresser on board? You may not have to wear a full wig, just a few strategic extensions maybe. I would have one of those little battery operated fans in my handbag too. Bon Voyage!

[Jackoh]

Looking back SnazzyD at your posts you have done so well to get to where you are and I'm sure all your extra planning will pay dividends. I'm sure the thought of what can go wrong adds to stress so try to take just one day at a time- that's all you can do! Floating around in dresses on a cruise sounds wonderful and maybe when you rushed around before that may have added to your problems with hot weather. As Dorset lady says now is the time to relax, relax, to pamper yourself and most of all have a brilliant holiday!!

[PMRpro Ambassador]

Never mind a wig - lovely sunhat with ties so it doesn't blow off...

I'm at a science meeting this week where one of the delegates has alopaecia and has a selection of delightful snood things. She's from New Mexico - it's warm! Can imagine you with twinkly shoes and a matching snood...

Enjoy yourself - but don't come back moaning you have put on too much weight

[SnazzyD in reply to PMRpro]

Oh yes, food. Finding gluten free has been ok if I am not fussy but high carbs and high salt have been difficult to avoid. My order of avoidance when faced with a dilemma is salt first (has rapid bloat effect) then carbs. Add to that avoiding salad for food hygiene purposes and dairy, I've eaten mostly meat and fruit.looking forward to a more balanced diet.

So far steroids and heat not too bad as long as I sleep in the afternoon whether I like it or not.

[PMRpro Ambassador in reply to SnazzyD]

You're in the Med aren't you? We eat a lot of salad in Italy in restaurants!

[SnazzyD]

The wig expedition was not a roaring success in that the lady performed a very rudimentary hair cut on the assumption that it was going to fall out anyway and some needed to go for the wig. The wig was expensive and I now realised she butchered it and assured me it would "settle". Therefore it looks realistic until you see the fringe and it says wig. It hasn't settled so far! Me and my wig have struggled to get along in the heat and a perfect looking do looks out of place when doing the tourist in Rome thing. Have bought some hats and actually, persuaded by my daughters, I went out au naturel this evening. So I may have looked like Richard III with panda eyes but hell, I was never going to see any of these 5 million tourists again.