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May 2017 chemo starters

Community Champion

Re: May 2017 chemo starters

Treehouse, I fully understand about the threat of endocardities returning.  Is there a time when this threat will lessen or is it forever now??  

 

 

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Re: May 2017 chemo starters

Morning all.

That's fab news tree house. Onwards and upwards!

Mishy, hope you feel better after meeting yesterday was probably what you needed to do ! Mini councilling session. I love my bob hat too. Loving the cold blast at the minute.

Enjoy your day ladies xx
Member

Re: May 2017 chemo starters

Jay interesting to hear about piercing as a way of reducing migraine. Unfortunately I am not doing anything that could increase my chance of another infection that includes dental work without antibiotics, piercings and tattoos.
I am petrified of endocarditis coming back as my risk has increased slightly since surgery.
Member

Re: May 2017 chemo starters

Treehouse im so happy for you good news rides or not you can enjoy your trip knowing you are on the mend 😊
Member

Re: May 2017 chemo starters

Oh yes i love my bobble hat too will miss it when it warms up meeting in whole was positive but its hard telling someone about all of this without getting a bit emosh was a little embarrassed but lady was lovely
Tatanya good to hear you enjoyed Greece in fact its great to hear that you are all getting on with things and starting to regain confidence its a slow steady process for us all but looking forward to feeling good again soon 😊
Community Champion

Re: May 2017 chemo starters

Hi Treehouse - have you considered this:-

 

Daith piercing and migraines. A daith piercing attempts to replicate acupuncture and may reduce the symptoms of a migraine. Daithpiercing has recently grown in popularity as a potential treatment formigraines. This type of body piercing involves the piercing of the innermost cartilage fold of the ear.

 

My sister suffered terribly with migraines from teenager til she had this done a couple of years ago (age 34). She still gets very mild migraines but NOTHING as bad as she used to get.  She would recommend to anyone who suffers from bad migraines.

 

Great news from your heart surgeon - I hope you skipped out - maybe in your mind you did!    Soooo are you going to brave the rides at Disney?  Personally, I don't like rides like these - but hubby and son do!

 

I think you may well have to do an IV of herceptin before the injections can start again, be interested to hear. xx

Member

Re: May 2017 chemo starters

Oh and Fitbit says 9000 steps today!!
Member

Re: May 2017 chemo starters

Hi all
Glad the hair is looking good Mishy it suddenly looks acceptable ( but I still love my bobble hat)
Not surprised the pip meeting hit emotional buttons and good luck with councillor tomorrow.

Jay I have had migraines since I was a teenager but only a few a year not several a week.

Saw surgeon today. He did ecg and listened for murmur. Also poked my Sternum to check it has healed. He answered all my questions. ( was speechless about Disney rides. Clearly has never been asked that before. ) said I am as good as new so can do anything i could do before iF I wish but said HE wouldn’t want to. Also said think about the harness on chest if going fast upside down etc)
So other than aspirin for another month I am off all meds and can start herceptin asap.
He doesn’t want to see me again!

Whoop whoop πŸ’ƒπŸ’ƒπŸ•ΊπŸ•ΊπŸ‘πŸ€œπŸ€žπŸ˜
Member

Re: May 2017 chemo starters

Hair update i finally can see a short pixie style emerging and i quite like it considering i loved my shoulder length brown highlighted hair before this im kind of liking the quirky silver grey with white streak at front another month i reckon it will not look like a gift from chemo anymore πŸ˜‚πŸ˜‚πŸ˜‚
Member

Re: May 2017 chemo starters

Pip meeting today went ok gkt really tearful when having to talk about everything how i am now etc Mai i have a counselling tomorrow will probably cry the whole time im there x
Community Champion

Re: May 2017 chemo starters

Treehouse - chatting with your visitor was a good step forward - letting go of those emotions will help with the long term healing.

Have you always suffered with migraines? x
Community Champion

Re: May 2017 chemo starters

Rosie - woops sorry to hear you've hurt your shoulder - hope that heals up very soon. I know where I overdid my walking and stair climbing, my muscles are still recouping!

See you Thursday! x
Community Champion

Re: May 2017 chemo starters

Hi Mai, pleased to hear your appointment went well and you've started to release your feelings. Good luck with the blood test today, let's hope those neuts have sorted themselves out!!

xx
Community Champion

Re: May 2017 chemo starters

Misy - Did you ever watch any of Victoria Derbyshire's blog? I found it really helpful and informative as I watched it before my treatment commenced and got a good idea of what I was to expect. I recommend anyone in that position to watch it - it really alleviated a great deal of my fears.

It's a book I really fancy reading - will get round to it one day! x
Community Champion

Re: May 2017 chemo starters

Hi Daffodil - lovely to hear you're feeling strong and going to the gym - I'm quite content with just building up strength through walking and going to work for the moment!

The weight isn't worrying me too much - I'm still appreciating and enjoying healthy food after those 3 horrid months of chemo (which, can you believe, will be 6 months ago since my last one at the end of this month!).
Community Champion

Re: May 2017 chemo starters

Oh Misy, sorry to hear you're having a battle with your rads team! Having to go there everyday is a chore without facing problems once you get there.

My team's advice was to moisturise the area with E45. When it gets to the stage of burning they recommended aloe vera. However, they did keep a careful eye on my skin everyday and on the penultimate treatment they provided me with the medihoney sachets - as a precaution I had to apply a small amount to the area of my node removal and along my mx scar.

To be honest - it wasn't hurting because the areas they were concerned about are very much numb from surgery.

Thankfully, I did persevere with the medihoney cream as about 14-16 days after final rads the skin became even drier, redder and began peeling. I had to phone the rads dept and they posted me lots more sachets thankfully - which worked and a few days later the skin was pale pink, not itchy and peeling had ceased.

Now to look at my rads area you'd never know I'd had it! However, I have the photos to prove I did!!!!!

All my herceptin jabs have been fine (sometimes just a little sting when needle removed) but all good. I think it greatly depends upon the person administering it as to how it goes.....!

Good luck with the remainder of the rads - you're almost at the end and my goodness that last day is worth celebrating!! xx
Member

Re: May 2017 chemo starters

Oh Mai interested to hear about your session. Chatting to my visitor today ( a colleague who retired early due to medical reasons) i got quite emotional. She recommended a councillor who does emotional freedom therapy.
Member

Re: May 2017 chemo starters

Jay - yes I will be at Comet Ward on Thursday, look forward to seeing you.

Had only been at work for an hour and we had a fire alarm and were evacuated! Boss not there as has been signed off sick with stress! Very surreal day
Member

Re: May 2017 chemo starters

Mai - good that you’re talking about it all and not bottling things up. I’m sure you will eventually feel better for it. Good luck with the neuts, fingers crossed they’re on the way up

Treehouse - hope the migraine goes away once your hospital appointment is out of the way
Daffodil- well done on the exercise programme sounds like you’re doing really well.
Andi - stick to the steps for now. I tried the weights machines at the gym and really hurt my shoulder on the DIEP side, I thought it was fine but just shows that you can’t do too much too soon.
Community Champion

Re: May 2017 chemo starters

Hi Ladies, glad you are all doing well and staying positive. I had my initial psychotherapy appointment today which consisted of over an hour of talking about my feelings and weeping!  I'm pretty upbeat until I start talking about how I feel then it all slides downhill!  It was recommended that I have 4 sessions of cognitive behavioural therapy to rewire my thought patterns.  Blood test tomorrow, I've eaten salmon and eggs today as a last ditch attempt to increase my neutrophils overnight!  Can't believe my neutrophils are still struggling this far down the line.

 

Tatyana, enjoy your last couple of days of β˜€οΈβ˜€οΈβ˜€οΈβ˜€οΈβ˜€οΈ and have your coat ready for when you step off the aeroplane! 🌬 😨

 

Daffodil, glad you are getting on well with moving forward and hope you are settling in well since your house move. 

 

Treehouse, glad you are feeling more upbeat and your husband is keeping you well entertained with a bit of kitchen opera!  Could the migraines be anxiety induced?

 

Shi, Benny Hill bald guy! Lol! πŸ˜‚πŸ˜‚πŸ˜‚ 

 

MisyAngel, it's strange that your hospital don't allow moisturiser but everyone else's encouraged it.  Bizarre!

 

Member

Re: May 2017 chemo starters

Daffodil - It’s great to hear your feeling strong ! Gosh we could all do with a bit of that πŸ˜ƒ I’ve started walking... but far mind you, but it’s a start. I can’t lift weights for a while yet or do yoga, still too soon since op, but as soon as I can I’ll be doing the same. Have a good week x
Member

Re: May 2017 chemo starters

Misyangel - Well done on having so many rads! Your nearly there. Each step brings you closer to finishing them ... positive thoughts! πŸ˜ƒ I never had rads so you’ll need the advise off some of the other ladies. I’ve heard creams mentioned, maybe need to know which one is most effective?
Member

Re: May 2017 chemo starters

Tatyana - many thanks for the sunshine πŸ’ƒπŸ»πŸ’ƒπŸ»
Yes this thrush thing is pants! Got Nystatin to take 4ml 4 times a day for a week! 😝
Member

Re: May 2017 chemo starters

Treehouse - Your migraine lovey might be linked with you thinking about your hospital appointment. I don’t know. But take things steady please. Do something you enjoy doing, be a bit self indulgent πŸ˜ƒ So aside from confirmed oral thrush today 🀬 The Fitbit arrived and like a woman possessed after dinner I hit our lane and did 2,500 steps πŸ‘πŸƒπŸ½β€β™€οΈπŸƒπŸ½β€β™€οΈπŸƒπŸ½β€β™€οΈ Feel quite energised.
Member

Re: May 2017 chemo starters

Andi, thrush-- oh for heaven's sake! Whatever next? But well done you for sounding so positive. Thrush dance:πŸ€πŸ¦πŸ€πŸ‘―πŸ‘―

Treehouse, sorry the migraines are back, that's one bit of your old life that you didn't want back!

Rosie, hope the first full day back at work went well. Well done on the bloods, I hope mine behave as well!

Greek sunshine to all you lovely ladies.πŸŒžβ˜€οΈπŸ”†πŸŒžβ˜€οΈπŸ”†πŸ‡¬πŸ‡·
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Tatyana πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•Ίfor you and enjoy beautiful πŸ‡¬πŸ‡· for a few more days, you’ll be back enjoying it again soon too. Treehouse, your husband is a comedian too πŸ‘πŸ‘mine keeps slapping my bald head like benny hill did to the bald bloke πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚hope your migraines ease off, you do push yourself hard the minute you feel ok, naughty. Mai, hope your neutraphils are up ok for your test again angel πŸ’•πŸ’•βœ¨βœ¨shi xx
Member

Re: May 2017 chemo starters

treehouse glad you are starting to feel better but sorry to hear you now have a migraine.  I could be linked as sometimes even though you may not feel stressed about appointment it could be there in your subconscious.  

 

I have just finished Victoria Derbyshires book from when she had breast cancer and really enjoyed it could relate to so many things that she spoke about.

 

Andi well done on doing 1000 steps, had my herceptin jab last week and it was so painless, the time before I ended up with big bruise on my leg where it had gone in.

 

tatyanna so pleased you enjoyed your time away and will be thinking of you on Friday.  That must be strange getting ready for new side effects and not knowing what to expect

 

I am on number 13/20 of radio and I feel like I am on a daily battle with them as they told me I can't put anything on the area for the whole of the radiation but as it has been itchy and sore I have put alo vera on which has no nasties in and the relief this has given me is amazing.  I just feel like a naughty school girl if I tell them I have put something on as they get very abrupt.  This has happened the last 3 times I have been and seen different people.  I was told we should see the nurse once a week but she has been off sick so I havnt seen anybody since my 2nd treatment and had a further 11 since then.  I have even been on the radioraphy guidelines and it does state to mositurise the area on there guildelines as long as no SLS in product.  Most people that have had radio have been told to keep the area moisturised.  Its the first time since diagnosis that I havn't felt comfortable at the hospital. :-(

 

Member

Re: May 2017 chemo starters

Andi and Treehouse, well done on doing so well. And everyone else, moving forward with positivity.

I am feeling strong, going to gym, Pilates and Yoga. The weight isn't going down too rapidly though. 

I wish everyone a positive, healthy week and for those with appointments, go well.

 

Member

Re: May 2017 chemo starters

Andi glad you are getting out walking πŸšΆβ€β™€οΈ it really helps. Sorry to hear the antibiotics are causing further issues. It takes a while for your body to recover after everything we have been through.

So my migraines are back I had been doing so well. And I have hospital tomorrow. Do you think there is a link?
Not sure how to relax as I don’t realise I am stressed. Been busy doing laundry and pottering. Maybe I have over done things already. Grr. Just as I feel better body says SLOW DOWN!!!!
Member

Re: May 2017 chemo starters

Treehouse 

It’s great to see you buzzing with newfound enthusiasm.  All the best with meeting your surgeon, and Wednesday will give you some added confidence once you’ve seen the physio πŸ‘πŸ»πŸƒβ€β™€οΈπŸ§˜πŸ»β€β™€οΈ

 

Jay

Glad to hear your cold has virtually gone.  Like you I’ll be having my Herceptin jab on Thursday.  I hope your son gets on ok On Wednesday at the dentist.

 

Tatyana

So good to hear that Greece has been good for you.  πŸ’ƒπŸ»πŸ•ΊπŸ’ƒπŸ»πŸ•ΊπŸ’ƒπŸ»πŸ•Ί for bloods!!!!! πŸ˜ƒπŸ’•

 

Katie

Best wishes for mammogram πŸ’• I think we are all jointly nervous about that appointment coming round, together we’ll pull each other through it.  Remember the old paracetamol half an hour before appointment πŸ˜‰

 

Rosie

All the best for first full day at work! Hats off to you lady!!

 

Today I have a doctors appointment as the course of my antibiotics for my throat infection has gifted me with oral thrush! 😬😫 If it’s not one thing it’s another!

First proper week without anyone about the house, everyone at school\ Work.

Walked up and down my lane yesterday 1,000 steps, not a lot but a start.  Had to count myself as Fitbit watch not here until 3:00pm - 4:00pm πŸ˜‚

Herceptin jab Thursday.  

Slept on my side last night!!! ! Had heart cushion with me which made it easier.  Only woke once for the loo. New found self πŸ˜ƒ

Start Tamoxifen on Wednesday ....... 😬😫

 

Community Champion

Re: May 2017 chemo starters

Hi Rosie - Comet ward at 2.30 for me! Is that where you're going? If so, look forward to seeing you as I never, ever go in on time!!

Wishing you lots of good luck in your back to the office day today....!! x

Member

Re: May 2017 chemo starters

Treehouse- glad you’re feeling more positive. Good luck with the Physio.

Katie- we’ll at least that’s a sign that everything’s working properly again. I would take that as a good sign too.
Tatyana - enjoy your last few days in Greece.I’m also starting on Friday, chemo unit phoned to say bloods all good- oh just like the old daysπŸ™„
Jay - when are you at the hospital on Thursday, I’m there at 2:45 for my pre chemo chat
Well going into the office now, first day back.Wish me luck!
Community Champion

Re: May 2017 chemo starters

I love that track - does he do it justice?  You'll have to record him singing it Treehouse, and post to facebook for us to judge!!

 

Good luck with your appointments this week - hope all goes well.  

 

Yes, even down here in the south east, we have a little of the white stuff falling.........!

 

Enjoy the remainder of your hols Tatyana - wake up each day and live the dream!

 

Happy days to all xx

Member

Re: May 2017 chemo starters

Thank you Jay, Katie,Mishy and tatyana it’s so lovely to have caring support.
Good luck with mammogram 😘.
Enjoy the rest of you holiday and start planning for the next one. Big hugs tatyana.
Well I have a busy week.
Back to Coventry tomorrow to meet with surgeon ( looks like snow again what’s that about)

Wednesday I start cardiac rehabilitation meeting with cardiac nurse, physio and fitness trainer. Husband keeps singing 🎀 at me...
https://m.youtube.com/watch?v=KUmZp8pR1uc
Member

Re: May 2017 chemo starters

Morning all.

Enjoy rest of hols tatyana. Bring some sunshine back for us all please!!!

Glad you feel on the up treehouse. Keep going and remember not to do too much too soon. Enjoy catch up with your visitor today.

Glad aches and pains are easing Jay. I felt horrible and tired and achey on Saturday and then Sunday what should make an appearance!? My monthly friend returning from July. Actually glad to see it return. In a weird way I feel as if my body must be getting stronger if it has all started again.???

Anyway . Anyone got anything going on this week? I'm enjoying last week before boys are off for half term! !! And my dreaded first mammogram week tomorrow eeek! !!!
Member

Re: May 2017 chemo starters

Treehouse, it's great to hear you sounding so upbeat. Of course there will be ups and downs, but the important thing is to savour the moment and enjoy the ups! You've come such a long way, now enjoy it!

Our trip to Greece has been wonderful, lots of heavyweight emotions but not all of them bad, and some relaxation and joy. Got a couple more days, then heading home to start the delights of the new chemo on Friday. Provided my bloods are ok. Dance please!
Have a good week everyone.
Community Champion

Re: May 2017 chemo starters

Hi Treehouse - how lovely to read your post - full of positiveness and good feelings.  

 

You are doing brilliantly and I'm so pleased to hear that you feel you're beginning to turn the corner.... expect a bit of slipperyness cos we all get that!  

 

It's good you've managed to arrange for a visitor and I hope you have a great time.  

 

Remember no one's life is "straight forward" - it's difficult to remember but back when life was "normal" we'd have days of ups and downs - we all seem to look back and think life was a bed of roses but it never was in realitity.  Of course, we've been through some days of sheer hell (you more than any of us) and I think we're all doing well - we just need to recognise it in ourselves!  

 

I'm good - got aching in my hip/pelvic area - but no where near as bad as it has been and I've taken no pain relief today!  Hopefully, I'm over the worse - I'm sure it was due to too much exercise last weekend!  My cold has almost gone too - so fingers crossed this week will be better than last!  

 

I've got herceptin injection on Thursday - ergh!

 

My son's got lots of root treatment at the dentist on Wednesday to get through - ergh!

 

But Friday we're off to family for a fish and chip supper so that'll be good!  

 

What are others up to this week?  Anything more exciting? xx

Member

Re: May 2017 chemo starters

Great to hear that Treehouse xx its lovely that you are turning a corner πŸ’– i think sunshine is helping my mood as its been so wet and depressing lately the sun was shining today it was cold but had a lovely walk with son and the dog just walking and chatting 😊
Member

Re: May 2017 chemo starters

30 min walk 14 were brisk. Whoop whoop!
This is the best I have felt since .....
head less fuzzy too!
Still get terrible aches and pains but generally don’t feel so ill or exhausted.
Feeling like I have turned a corner. Mentally feeling like a weight is lifting too I have arranged for a visitor tomorrow and seem to have some motivation today( I know that is not a straight forward path and expect ups and downs)
Hope you are all ok
X x
Community Champion

Re: May 2017 chemo starters

Tatyana - I totally agree!  The damn falsie is soooo heavy!  I keep meaning to weigh it! haha!  I'm just imagining me carrying out that task using the kitchen scales and my teenage son walks in..... I wonder what he'd say - more than the usual grunt I bet!!! 

 

Member

Re: May 2017 chemo starters

Mai, I’m paranoid about lymphodema as my bc arm is my only good arm, the other being paralysed. Actually, throughout chemo my paralysed has had a worrying amount of fluid retention. Really puffy on the back of my hand. Then today, it’s back to normal, so I hope that was just chemo se rather than lymphodema on that arm.

Member

Re: May 2017 chemo starters

Is there a better feeling in the world than taking your bra off at the end of a long day?
Yes. Taking a post mastectomy bra and falsie off at the end of a long day!
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Thanks mai, just thought it might help h and anyone else who’s employers are being πŸ’© bags. I’m venturing out next week, got my glittery space suit ready πŸ‘©β€πŸš€πŸ‘©β€πŸš€πŸ‘©β€πŸš€πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ’•πŸ’•βœ¨βœ¨shi xx
Community Champion

Re: May 2017 chemo starters

BuddyFan, I'm taking CBD oil and no SEs, other than feeling a bit more relaxed and less anxious! I think that's a good SE! Hallelujah!  You can drive as the psychoactive part of the plant (THC) has been removed, so it completely legal.  You are harvesting the medicinal benefits only.

 

Andi, glad your quality of sleep was worthy of sharing. That's a good sign.  #sleepenvy  πŸ˜΄

 

Hi Katie, lovely to hear from you. The job at the doctors sounds good and I'm sure you will be in the right place to help with post-chemo-post-cancer anxiety/hypochondria/paranoia.  We can't wrap ourselves in cotton wool (only scarves and gloves) so be brave and step out into the world.  Keep your vaccinations up to date and eat healthy.  You could discuss this with your GP or breast nurse if you're worried. 

 

Jay, aches and pains in pelvis, yes, me too.

 

Shi asked me to post this HR thread about cancer and the disability discrimination act 2010 for everyone, so here it is (hello Shi πŸ™‹ X)

 

https://www.personneltoday.com/hr/steps-to-take-to-avoid-discriminating-against-cancer/

 

I had a long chat yesterday with the lymphodema specialist about my anxiety around what I can and can't do. She didn't seem to feel there wasnt any issue with having a long soak in a hot bath but saunas and hot baths should be avoided if you actually have lymphodema so as not to aggravate it further. I think I will still keep my surgery arm hanging out of the bath though as I haven't developed that level of confidence yet.  Maybe it's the psychotherapist I REALLY need to speak to rather than the lymphodema specialist!  #isanybodyoutthere #thewindmilsofyourmind

 

Have a lovely weekend ladies. Xxx

Member

Re: May 2017 chemo starters

Mai, thanks for the cbd oil info. I think I will start it, but need to do a bit more research on se. Are you allowed to drive if taking it?

Community Champion

Re: May 2017 chemo starters

Oh Andi so pleased to hear you made it out of your 4 walls today - it's so lovely that first journey out after op and I still remember mine! Your soup and carrot cake sound delicious.

Lovely to hear you're getting better sleep - me too - me and hubby have gone back to our own sides of the bed! So much better for me! x
Member

Re: May 2017 chemo starters

I escaped the 4 walls today to my local garden centre.  It’s quite small and posh with great gift ideas 😁 Bought 2 cards for friends who are ill, a homemade carrot cake - just because this girl fancied a treat and a homemade carrot and sweet potato soup for lunch, which was gorgeous!!! Going to nick ingredients off the tub and make at home myself πŸ˜‰ Was only out for 30 minutes but it was soooo good to be out πŸ˜ƒ 

 

I’ve managed to only wake twice a night recently with hot sweats and needing a per, I put this down to switching from caffeine drinks to non caffeine before 8:30pm and half a sleeping tablet.  I’m having really good quality sleep and waking up refreshed.... just thought I’d share!

 

Member

Re: May 2017 chemo starters

Mai - Oh you make me chuckle!!! πŸ˜‚πŸ˜‚πŸ˜‚ Loving your new Summer look!! xx

Community Champion

Re: May 2017 chemo starters

Thanks ladies - it really does sound such a common thing this hip pain! - I'm def going to mention to onc when I see them on 13th! Be interesting to hear what yours has to say Mishy about it when you see them.

 

Nice to hear from you again Katie - the job sounds great but I understand your germ worry - I'm the same working with primary school children - but I guess it's just a case of boosting our immune systems and continually using anti-bac wipes on your hands!  I'm just getting over a cold which I've had all week - and it's been horrid as I fortunately have escaped them since before this time last year!  Today I feel so much better but I do have a very deaf right ear!

Member

Re: May 2017 chemo starters

Hi ladies. Sorry missed you all. You all sound like you are doing OK? ?

How's the job hunting Heather?

I was suffering with hip area pain Jay especially at night. It has got loads better last couple of weeks.

Had my interview on Monday. Went quite well and will find out next eeek. Although am now thinking it may not be the best place for me at the minute or am I just using it as an excuse? It's doctors surgery so will be on my feet for 5 hours a day and dealing with people and their germs!!!! Do you think our immune systems are strong enough yet? I finished all treatment end of October? X don't really know what to do?

Oh treehouse. Didn't realise you couldn't go on rides after heart surgery . Will that always be the case? We too have booked florida. We go in July. 9 days in Disney / universal and then 5 days in St Petes to chill out on the beach . Can't wait x