Your doing the right thing with hubby
Keep him in his room
If we have anything here it’s isolation
Milton in the bathroom
It’s sprayed on shower toilet sink taps etc
Masks when going into toilet
Bleach for the toilet and the flush
I wear my mask and Milton all the dishes and I wear gloves
I take food/drinks up and collect dirty plates cups and Milton until the illness threat has passed
So far it’s worked well for us and I have avoided it
I think for me my main concern was having a clean towel every day and clean clothes
My kids did the washing up and wiped surfaces
It’s not really your home you need to worry about it’s people when they are poorly
Our homes we live in all the time and I think we are used to “bugs” that we live with
I’m still shielding and I’m happy with that as I feel safe
I still do shopping on line
I get my clothes on line
I do go for a drive to use drive through for a coffee and sit in car park
I keep wipes in my car to wipe the takeaway cup
My friends visit as long as they are well and sit in back garden away from me
My kids are really good at helping out
I don’t sweat about the jobs anymore if I can do something I do it if not it will still be there tomorrow
I bought a very light Dyson so I’m able to Hoover
I have recently found out that I’m relapsing after 4 years of my last Stem cell transplant
I also have new lesions (I have boney disease)
Im hoping to be accepted onto the PROMMISE D trial and will find out when I meet the trial consultant in a couple of weeks
Oh @2DB im so sorry to hear that you are relapsing I understand that will have been hard news for you and yours x You have already gone through treatments and can see the lengths you are taking to protect yourself, you’re amazing x I hope your consultation goes well and they can get you back on the right track to remission xx
@2DB@Spangleystar ive never even contemplated what we would do if Keith was Ill! We are in the process of clearing years of clutter as will be downscaling late next year to a bungalow and just got rid of the spare bed! Ah well, he can always go in his fishing bivvy in the garden
@Spangleystar nor he is definitely not a cook! I’ve looked after him far too well! a sausage sandwich sounds perfect! tbh I’ve mainly stocked up on cereals and tinned soups, just easy stuff for if I want to eat, I’ve bull bought all the usual household groceries, enough to manage for the 100 days really, so he only had to nip in and buy the fresh bits, fruit, milk, youghurt, just trying to make it as easy as possible, until I can get out there again, I’m hoping around the 6 weeks mark I can get back to my 7am masked tesco shop I’m figuring if it’s ok for me to go to hospital for bloods then it’s safe to do that ,
Oh yes, penny has dropped that all good wotk will be undone by the time I’m home anyway I’m envisioning for some reason that I’ll come back a completely weakened form of me that might never have my strength again, and I can’t shake it, I know I just have to go slow!
Oh @2DB, the pain and fear of fractures from lesions are the hardest part of all of this for me, so I really feel for you. How are you coping? Will they give you any radiotherapy for the new lesions? That was a game changer pain and mobility wise for me.
Fingers crossed for this trial my lovely, remember you’re truly incredible - I love how you’ve embraced the changes you’ve made and remain a force of positivity.
I’d never even thought about going for a drive - when I have less fatigue I’ll go to a beautiful parking spot with views across the South Downs, I hadn’t even considered that before so thanks for the inspiration.
Xx
@Byrnebaby If they don’t deliver to your area could you consider click and collect from Tesco? I’d worry that even at 7am, masked etc your germ risk there is probably quite high? Xx
Also @Byrnebaby Try not to go to hospital for your bloods, I get mine done at GP where they put me in a room straight away and the nurse comes to me so very limited exposure xx
@Spangleystar i think this is something I’ll have to sort through Christie, I’m sure they will be happy to hand over post-op to local hospital, because if I come out with the Hickman I’ll have to go weekly to get it washed out, most people locally have had that happen, so it’s going to be a matter of coordination/wait and see, as I don’t know how often they will even want bloods, there’s so much involved isn’t there? Haven’t had the care yet and I’m worrying about the after care!
Yes UCLH sorted it on my behalf. I asked them if they could sort it with my GP as it’s very close and even my ‘local’ hospital isn’t I had my line taken out on day of discharge. The requirement for bloods isn’t high (from UCLH anyway) I was discharged on 19th had bloods a week later 26th May. Next set is on Weds 10th June - nothing further booked, will see what they say on next telephone appt on 17th June.
Unless there is a reason to keep the line in, (like needing blood, platelets, antibiotics etc) I’d expect them to take it out before you leave to reduce the risk of infection.
I say this with love - please don’t think that far ahead, you can’t predict exactly how this will go and will mentally exhaust yourself trying, you need to go with the flow - these medics know what they are doing, it will all be ok xx
And yes, I was told - don’t go anywhere that you don’t have to, certainly avoid shops, public transport and restaurants. I added schools to that list to my own advantage - no more ‘can you drop my pe kit down, when one of the boys have forgotten it xx
Thats a very clever add-on @Spangleystar ! Ingenious
Thank you for bringing here and talking me through, I know I need to stop playing chess in my head, I can’t plan for outcomes and eventualities, I guess once I’m there and in the loop it will be ‘easier’ xx
Yes, he will be doing that, I just thought at maybe 6 weeks I’d be able to go with him , we do have delivery, but they aren’t very good with the dates on fresh food thanks @DuncanB so it’s a strict no-go really until end of September
Who knows by 6 weeks your blood counts maybe stabilising and you may start to feel better. Personally I think that is going to be the hardest time to remind yourself that you are still at risk. Even if your immune bloods are back to their fighting weight - you won’t have the benefits of the immunity you have built over the course of your life as well as all the childhood routine imms or covid and flu.
I have to keep reminding myself of this, because friends and my kids don’t really seem to get it (obviously not being able to have their friends hang out here, is sad for them, as this place was like a drop in centre before ) xx
@Byrnebaby oh something I’m not sure if I’ve mentioned but you likely already know from other’s experiences. They give you GCSF before leaving hospital and this gives you a lovely boost to get you home. Expect a drop in your Ns once you’re home - as the boost wears off and your bone marrow takes over. I went from 3.67 to 0.8 in a week. It’s normal, just wanted you to know it could happen xx
No I didn’t know that so we get them in hospital again, and then when home? How many for home? I’m not too bothered about them as Keith will give me them x @Spangleystar thanks for the warning x it’s going to be slow isnt it
I understand that will have been hard news for you and yours x You have already gone through treatments and can see the lengths you are taking to protect yourself, you’re amazing x I hope your consultation goes well and they can get you back on the right track to remission xx
I’ve looked after him far too well! 
a sausage sandwich sounds perfect! 
tbh I’ve mainly stocked up on cereals and tinned soups, just easy stuff for if I want to eat, I’ve bull bought all the usual household groceries, enough to manage for the 100 days really, so he only had to nip in and buy the fresh bits, fruit, milk, youghurt, just trying to make it as easy as possible, until I can get out there again, I’m hoping around the 6 weeks mark I can get back to my 7am masked tesco shop 
I’m figuring if it’s ok for me to go to hospital for bloods then it’s safe to do that 
,
yes, penny has dropped that all good wotk will be undone by the time I’m home anyway 
I’m envisioning for some reason that I’ll come back a completely weakened form of me that might never have my strength again, and I can’t shake it, I know I just have to go slow!
I’ll have to go weekly to get it washed out, most people locally have had that happen, so it’s going to be a matter of coordination/wait and see, as I don’t know how often they will even want bloods, there’s so much involved isn’t there? Haven’t had the care yet and I’m worrying about the after care! 
thanks 