Great news that you managed to see your family and friends. That must’ve really lifted your spirits X
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@Danmar oh hope you get some good news soon and the chemo has done its job. We all have a long journey ahead I fear…wake me up next year when it’s all over 
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I think I’d feel a bit fed up to and
Sometimes it it’s really hard being patient isn’t it @Danmar X
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Hi all,
Neutrophils rising slowly and all other bloods appear good but sadly creatinine levels still a bit high. But on litres of iv fluid and they seem to be dropping.
Thanks for thinking of me @Danmar.
@Summertime make sure there is someone who can bring you food/ snack/ treat parcels in. After 4 weeks I’m fantasising about food I will cook and eat when I am home! Xxxxx
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Hi @ChrisCKW. Fingers crossed the IV fluids keep doing what they need to. What foods are you fantasising over?
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I take it food not so good? Hoping I get a date on thurs when I see Dr C.
What’s visiting rules? Xx
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@summertime only 2 nominated visitors over entire stay; only prebooked visit by one of nominated visitors; only 1 hour per visit (although they aren’t horrendous about enforcing that xxxxx
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@ChrisCKW oh ok thanks. I will only have 1 visitor my husband as I have 3 daughters and can’t choose between them. I wonder if he will be allowed 2hr visit if it’s only him. Oh well will find out soon. Hope you get home soon for some delicious nosh xx
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Honestly anything fresh with flavour and I’d love to be cooking for myself again! Have frozen a few meals just in case; but I am really really really am looking forward to cooking and eating my food (so much growing fresh fruit and veg!)
Xx
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My daughter comes and she stays an hour and a half or so. They turn a blind eye. I couldn’t have survived without her doing my laundry and bringing me her soups in xxxxx
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Ps @Summertime they are hoping that rules will change soon on length/numbers of visitors but at moment it’s also a no children policy (although they are flexible if they are older and they can pretend the child is an adult - or that’s what they said when I asked about child visiting)
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That sounds wonderful. Nothing like cooking your own food. Fingers crossed you’ll be doing that really soon 
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So good that you can share all of this with @Summertime. It must make such a difference to have inside information 
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Hi @ChrisCKW @Summertime @Danmar, you are really keeping each other going through this scary, but often boring time.
Mind you @ChrisCKW I think you are like I would be fantasising about freshly cooked, fresh produce food.
@Danmar you must be so fed up not having your transplant date yet, you are having to be a patient, patient, not easy.
@Summertime I hope you get a date on Thursday.
Yes, aren’t visits from family members so important and priceless.
We are with you all and really looking for your updates.
Look after yourselves you are all very special people.
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@ChrisCKW @Erica @Nichola75 this inside info is fantastic and such a comfort. Thank you @ChrisCKW xx
@ChrisCKW Is there somewhere to warm food? Have you managed any exercise? I imagine you have to stay in your room?
xxx
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Hi @Summertime the staff (both nursing and housekeeping) will heat food up for you. It’s best if it’s frozen then they label it pop it in their freezer and they’ll then get out whatever you want. My daughter made soups and a chilli and a casserole… they all heated up well.
There’s a small but adequate fridge in the room. My tastebuds were really struggling after chemo and anti rejection drugs so mine still has bottled water and lots of different types of drinks (nothing tasted good or right) plus grapes and satsumas and baby tomatoes (it was similar to being pregnant with random cravings). You could easily store Covent Garden soup or similar in the fridge and they would warm that through too.
There are lots of cakes and biscuits on offer (sadly I don’t have a sweet tooth) and they’ll find something for you to eat if you have missed meals/are hungry/ or just didn’t like your meal choice when it arrived
There are few fresh vegetables and nothing with lots of flavour. They have sachets of salt (but not pepper) salad cream, mayonnaise and vinegar.
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They lent me this little cycle/step machine - but not allowed out of room so any exercise has to fit in a smallish but reasonably sized room.
I felt dreadful through chemo and the immune suppressant and anti rejection drugs. I had dreadful
and temp at c41 for 5 days (they called it sepsis but couldn’t find infection or virus). I was slipping in and out of awake - but since then have been so much better. CANNOT fault the care and affection from staff.
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@Lyn99 - are you in or out or on the cusp of going home. (Sounds like the hospital Hokey Cokey 
) xxxx fingers crossed you are home or due home v shortly xxxxx
I’m guessing I’ll find out tomorrow when consultant back on xxx
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@ChrisCKW thanks so much for all this info. I feel prepared and ready, i just wish I could get in there and get started Fingers crossed I will find out Thursday xxx
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Hi summertime, any word on a date for you yet? Fingers crossed for you!!
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