I don’t need encouraging 
I wear masks in all public places at the moment my counts are low. I’m also getting taxis the other side to avoid the tube or buses.
Thankfully an ASCT so much less stressful than requiring a donor xx
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Good plan @Spangleystar and sounds like you’re doing everything possible to reduce risk.
I’m 11 months post donor transplant and still wearing face mask in shops cafes etc as still risk of infections.
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Oh star! 
@Spangleystar sounds like itvwas a nightmare! Hope you are in recovery mode now sweetheart x it’s all getting a bit real now isn’t it, hope your planning is working out?! Just saw your post on the other thread, my radar nurse said this might be offered when I go to The Christie- like you I’ll be on my own, and if I can I will be refusing it x I’m not going to be vulnerable and weak in a city I don’t know, I’ll be asking to be admitted x BMB on 15th April, and Christie visit 8th April, last jab 7th April, so I’m guessing I won’t be far behind you x
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I don’t want to rule it out without more discovery, I may ask if I can visit it so that I can get a feel for it myself.
It’s a lot though, when you’ll be on your own and already feeling vulnerable…
Yes nof long now and you’re all done on induction - what a ride, let’s hope this next step means it’s a very long time before we have to do that again 
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@Spangleystar I guess all you can do is have a look , I definitely won’t be doing it, just doesn’t seem ‘right’, I wouldn’t even want to put anyone in my family being responsible for me while I was so vulnerable 
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I did ambulatory in Birmingham and my daughter came with me. We drove her car up and stayed in a cottage a walk/drive away.
Had my picc line put in first day second day I had melphalan, I suffer with hyper sickness and started being sick that night. We rang the helpline number (your given this at the start of your stay) and tried to stay in the cottage but was admitted early the next morning, my daughter drove me to the hospital.
We used deliveroo to deliver food for the first two days
My daughter had to isolate for a week before we used the cottage. I couldn’t have visitors as it was Covid times.
Birmingham was a 3hr round trip for us.
Thank goodness you had your daughter with you. Doesn’t sound like AC was ideal for you. Thank you for sharing your experience xx
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@Spangleystar how you doing lovely? I don’t think AC is looking good, do you? If we are feeling rough, how can we be expected to cook etc? And ordering food in? We have to be very careful for a while with take-aways etc because of low immunity, at least for the 100 days I think x
@Spangleystar star which masks are you using? I must stick up too! I’ve been overdoing it I think and even using them for cleaning, when I have the energy!
I think this is why I’m finding it confusing, having immunity worse than a new born baby resulting in so many restrictions for 100 days, but get a takeaway from somewhere you’ve no idea on the hygiene of immediately after - if you’re up to eating. Consider the cleanliness of your own home - go stay somewhere with hygiene concerns flagged on google reviews, that you’ve no control over. It’s all mixed messages.
I get the concept and if you are in the position where your other half has retired or you have family of an age that they could support then I can see how it could work really well. However this is not a time for feeling the solo independence - I’ve travelled all over the world on my own. It’s not that I’m not independent, far from it, but I am concerned that I won’t be in the position to do some of what is expected - or even advocate for myself.
I have no doubt that the healthcare teams will be brilliant- special people work in healthcare, it’s not that - it’s the feeling of personal responsibility that I normally take in spades and now I need others to help me with.
So in short, I don’t know if it is right for me yet - but I’ve not closed the door on it totally. The one thing in it’s favour is no waiting for a hospital bed and I do so need this over! I’ll have a chat with my lovely new CNS and keep thinking on it xx
I’ve got some silk ones from jasmine silk which have a separate filter - that’s all washable (as I hate the environmental impact!) I use those for popping in the shops briefly. So much nicer on your skin. Silk Face Masks | Silk Masks | Jasmine Silk
I also have disposable ones Nufasion 20pack FFP2 Face Mask UK Certified KN95 Dust Masks Filtration Rate ≥95% 5-Layer Protective FFP2 Masks Individually Packaged High Filter Respirator Mask For Daily Prevention And Protection : Amazon.co.uk: DIY & Tools which I use for anything that may be too grubby and will use them in London.
What about you? Xx
It’s really important to keep an open mind @Spangleystar and @Byrnebaby
You definitely won’t be left to fend for yourself.
Rest assured you won’t starve either.
The hospital food for what they have available in terms is fine. Not cordon bleu but functional.
Each hospital trust has a budget of about £10 per day for each patient to cover breakfast, lunch and dinner so you can see why it’s a challenge.
I know the food is something everything asks you about and so many people moan about it.
My perspective was always that I’m in hospital for the clinical care not the food and use to joke that I don’t go to a restaurant for clinical care.
Takeaways are something I’ve avoided even almost a year on form Bone Marrow Transplant.
Obviously I had a donor transplant but wanted to let you know the following not to scare you but to reassure you that you will get nutrition into your body no matter what.
I had 5 days when I couldn’t swallow so I was getting all my medications and even my meals through IV. Also had the dietician in regularly to check.
Hope that helps and reduces worries and anxieties
Clearly no-one goes to hospital expecting good food - but I do expect it to be safe and sanitary, and ordering from deliveroo doesn’t give me the same confidence. As I said before it’s the mixed messages I’m finding confusing.
Thank you for sharing your experience @DuncanB. 5 days without being able to swallow sounds nasty thank goodness you were in hospital with nutrition through IV.
I haven’t made up my mind yet, but I do respect my own agency and it needs to feel like the right choice, so I’m still in discovery right now and considering my options.
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Yes definitely expect safety and high standards of cleanliness @Spangleystar
I certainly wouldn’t be ordering anything through deliveroo or anything similar as takeaways very much a risk.
One thing I found really helpful whenever in hospital whether locally or at Transplant Centre in Glasgow is to make friends with the Hotel Services person. This is the individual who takes food orders from patients and makes sure you don’t have anything that presents a potential risk.
For example at Raigmore Hospital in Inverness they didn’t allow you to order salad if neutropenic.
The Hotel Services person is also a great source of advice as to what’s good and not so good in terms of food choices.
Irish guy at Transplant Centre was excellent in that respect.
I personally found the soups, sweets and pasta dishes to be good choices
As you say it’s important that you make the right choices for you
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Just to clarify we used deliveroo to get groceries as we had a kitchen in the cottage and we had homemade spag Bol
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This maybe helpful it’s a transplantation chart and gives an idea of neutropenia. The hospital will be aware of that and your food will be tailored for it.
You will also have a wipe to wipe your hands before food
Made me laugh 
@2DB that many of us assumed deliveroo was just about takeaways.
If my memory serves me correctly they were delivering for the Coop in COVID times
Thanks for adding clarification and hopefully enjoyed the Spaghetti Bolognaise
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Deliveroo still deliver from supermarkets
I’m still shielding and it’s great for me
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Glad to hear that it’s great for you while shielding @2DB
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@Byrnebaby Bless you, I know exactly how you are feeling. I was diagnosed 2 years ago and never heard of my type of blood cancer before. I have Chronic myelomonocytic leukaemia ('CMML') and due to age cannot have a stem cell transplant.
I also live rually. It’s natural to want to wrap yourself in cotton wool so don’t go too hard on yourself. Your not a baby, your just dealing with the unknown.
We all deal with our emotions differently and have different coping mechanisms.
I take one day at a time and try not to look too far ahead keeping things simple and not to put pressure on myself . I am constantly thinking that I moan about my condition to my team but as someone else pointed out our Medical Team need to know how we feel in order to help us.
I have found this forum has been a great help and hope you do too. X
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