Tuesday, 19 November 2013

What a girl goes through for a holiday!

Random excitement burst..... BACKSTREET BOYS ARE COMING TO THE UK IN 2014!! Woop!

Now, back to the reason for the post!

For most people, when a holiday is approaching, the biggest issues are deciding what clothes/shoes to take, book/entertainment and how much money to take with you.... for me, add numerous other complications into that.

First off- insurance. It took me about 3 weeks to get a full and accurate insurance quote to cover me for everything medical. This process involved me crashing about 4 different company quote engines, talking to sales reps numerous times, then eventually them holding their hands up and saying 'we haven't a clue what to do with this, we'll get our specialist underwriter to call you direct'. Another 2 long conversations with her later and I finally get my quote. This amount would easily pay for another adult to come along on our 2 week all inc Caribbean holiday. Money warning bells in my head started chirping, but Glen being the voice of reason said he would rather pay this and know that whatever happens to me on holiday, it's covered.

Insurance check, next up... oxygen. Flight oxygen is easily sorted... an email to Virgin to reserve it, then get the docs to fill out their medical form so they can have everything tied up prior to departure and job done. Problem being I'm on oxygen 24/7, I need something for the time I'm not on the plane.... my research started with the British Lung Foundation for their advice (as CF Trust very kindly ignored my email!) After getting a list of some companies that may be able to provide oxygen in some form, and contacting them direct I established that due to travelling so far, I wouldn't be able to get what I have at home (numerous cylinders) so I would have to source a concentrator. I eventually found 2 companies which did portable machines (POCs) which could run off batteries and both ac and dc mains... so effectively can be used anywhere. I asked for a couple of quotes and eventually settled on the one to accompany me in my travels. I should be getting that next week a couple of days before I fly so that I can have a play and check that I can work it while I have people on hand to help me with it!

To get me tip top for the duration I'm away- so I'm as best prepared and hopefully to prevent any problems while I 'm away- I begrudgingly agreed to a 3 week IV course :( I fought for only 2 weeks, but no it had to be 3!! I am now on the last week of them (hazaa) but it hasn't been a smooth course this time around. My first week I was on 3 drugs, thrice daily. From start to finish each dose took approx. an hour (setting up, mixing administering and clean-up) this in itself led to an incredible amount of tiredness. With IVs, they have to have a minimum amount of time between each dose, and with having it 3 times a day, this results in having to get up early for the 1st dose, or the bedtime ones get too late. I generally do the 1st dose, then back to sleep for a while, but it is still broken sleep. For the first time in a long while, I did suffer with proper side effects of headaches after every dose that first week which was one reason (the other tiredness) I asked to have the number of drugs reduced to 2 for the second week. 2nd week, headaches stopped and dose time dropped to about 25 minutes, which felt like bliss (and lunch was only 1 drug so even quicker!) My only problem that week was that I seemed to pick up a 24hr stomach bug and couldn't eat (struggled to keep biscuits and water down)... even my anti sickness IV didn't touch it :( Luckily that passed and I got right back on the eating!! Yesterday my drugs were changed about, still on 2, but one of the ones I was on before has now run out nationally so they no more to give me! My combination now has seen me return to the one that was dropped form the week before, so I hope I don't get headaches back *fingers are crossed*

In clinic yesterday I saw the dietitian who had seen me on day 1 IVs and my weight had dropped a teeny amount (1kg) but this was mostly to the fact that I had decided to run an 'eu naturelle' test and see what my weight did without doing any PEG feeding between clinics. (3 weeks off feeds) I was surprised I had only dropped 1kg, but she was a little concerned about it only because of holiday approaching and I won't be feeding while away. So asked me to try to put that kilo back on before I go away. Saw her yesterday, and had she not of been wearing tights, I think it would have been safe to say that I knocked her socks off!! I put gained back that kilo lost, plus another 1kg so yesterday recorded my heaviest EVER! I now have a BMI of 21! I'm now excited to be going on holiday with an appetite to see if I can put on weight abroad, with no feed or dairy (I hate foreign milk!) helping that along is that I've been put on a week of steroid tablets to try to help my chest inflammation. Last time I had these tablets I ate like a frigging horse, and my appetite is already more than it was then.

I've been preparing bit by bit my holiday drug stock take. When you have 6 pages of repeat prescription from the GP as well as about 4 things you get direct from hospital, getting together enough tablets, inhalers, anti-biotics, pain relief and plenty of 'just in case' items takes a lot of thought! Over the past 2 weeks I've done multiple stock takes to see what I have of everything I take, and when the current amount will run out, therefore how much do I need to order in before I go, and what will I need to order before I'm home to have ready for me to come home to.... I'm getting there, last GP run is going in tomorrow (I hope!) so hopefully by Monday I should be able to pack my holiday drug holdall!

Lastly, the normal holiday packing panics... 'will I have enough xyz?', 'how many bikinis should I take?' (Will I feel comfortable showing my stomach with the PEG, should I take swimsuits?!) More importantly for me, I need to decide what books I'm taking, and when to start my holiday reads. When I'm on holiday, and don't feel guilty about doing nothing but reading, I get through books like they're going out of fashion. Glen isn't a big reader, and won't take books that I'm bothered about reading so I need to make sure I take enough to keep me going for 2 weeks, but not too many so it is too heavy in the suitcase! I know here, techie folk are screaming 'Get an e-reader'... I have a kindle, but I save my big chunky (serial) books specifically for holiday so I can get my teeth into them. Ho hum, busy weekend packing clothes and choosing books!

Lastly, having been watching lots of Australian Masterchef and looking through recipe books and food-y programmes etc, I have an interest in making yummy things. So weekend before last we decided to attempt Black Forest Roulade (v.1) we got all the ingredients sorted and started... the choc melted fine, the eggs didn't seem to want to whisk into peaks... even after Glen giving it such a good go for a long time... me being the 'bosher' I just decided to go with it and see what happened... the bit that struck me as we have severely gone wrong was the point in the recipe when it said to 'spoon the mix into the tray'... mine just poured and almost overflowed the edges of the tray. As it was cooking it looked kinda like an alien creature, when it came out I then could not separate the baking paper from it. We had somehow managed to create a gooey, crispy, chewy chocolatey (papery) mess. It cooled and went in the bin. The house smelt good though! This week between us we found alternative techniques to try to iron out those... kinks! This weekend... Black forest roulade v.2... and look for yourselves below! Not perfect, but a darn sight better and at least it looks ok (from one side, the open side looks a bit like roadkill!!)