@Spangleystar 
yes it’s a tough tightrope to walk as it gets closer, trying to keep it together for everyone else around us also, but breaking apart at times inside, I think once I’m in, and another readin I’m not too bothered about visitors, is that I can just let go of it all, , even now I’m only having contact with the kids and hubby, can’t see and talk to anyone else about this, I can’t take the ‘looks’ and some of the words said have been mortifying
Oh I’m so so so sorry, you’re so all over this I assumed you would know.
My consultant said almost everyone has one whilst in hospital and he’s already requested irradiated blood for me. I don’t know why it spun me out so much but I really felt 
perhaps it was because it was brand new info.
I really hope I haven’t given you a wobble or worst a shove (
) on the emotional tightrope. Deeply sorry if I have. I’m rationalising it by millions more people have blood transfusions daily, than stem cell transplants - it’s common practice, not the part of the process to concern yourself with etc etc xxx
@Spangleystar no don’t worry, it’s ok, yes, very new info to me! Is that to give us a ‘boost’ in a way, not something I’d imagined needing as no bleeding involved , yes I can imagine that causing a spiral x 
glad you managed some sleep, it’s needed x
I’m constantly telling people they can’t come in! Especially work folk it seems, I’m not a spectator sport and it’s not people I’m close to. The only people I want is my Mum (because she’s awesome and will truly help, she’ll go to the laundrette and bring my washing back clean and frankly I’d only want family helping with my smalls 
) and maybe my friend who lives a few miles away from us but runs gyms and has one close to the hospital so goes up once a week. He has said that anything I need from home he can get and bring up on a London day. He’s also offered to collect and restock my ipad with downloads as the gym wifi is fast!
I’m conscious how much I’m putting on my husband and would rather he uses his weekends to catch up on the washing, help kids with homework etc rather than spend a day travelling. Plus the 3 of them going to schools every day concerns me from a germ perspective xx
Yes basically the melph is so strong it wipes everything out and so they need to replenish xx
Here’s what Copilot said:
@Spangleystar this is what I’m thinking with my hubby, it’s goin to be a huge shock for him being here alone anyway, and having to look after himself and work all week, I’d rather he had some time to just ‘be’ instead of doing a 140 mile round trip and I might not be up to it x we don’t have laundry facilities at the Christie, so I’m having to try and take all clothes with me 
I’m not too keen on seeing my kids, while I’m there and at my lowest, and could never ask them to do that laundry, Dan & Adam are near, but I’d be embarrassed to give them that stuff, plus like your hubby Adam is a teacher, and could bring anything in, and Rachel my daughter, is a bit far out to rely on for laundry x so I’ll be rolling up, hopefully ready for only a 3 week stay , I have no one else x just want to get through, privately x
@Spangleystar ahhh ok thank you! Not too happy with that to be honest but I guess, what can I do
To be honest, I’ve packed what I think is enough because I can’t rely on my mum to come up - not that she’s not reliable, but it’s a long journey she’s in Dorset, my step dad and her seem to be getting cold after cold at the moment, even though they’re careful.
No laundry facilities at UCLH either but there is a laundrette a 10 min walk away my mum’s done the research 
Your son has the same name as my hub! 
Xx
I’m so sorry to be the one to tell you that 
xx
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Ohh don’t worry @Spangleystar honestly, part of the process isnt it, I’d just not thought haha, I was in the mind space that ’ well at least it’s not an operation’ 
hadn’t thought of how low our blood counts get and what the melphalan actually does x I’ve spoken to loads of people who have gone through it and not even twigged one lady I talk to came home last week, and shes had to be given the growth shots again to boost her up, it’s all very complex isnt it, and I think our brains are trying to protect us from the complexities x
And of course we have seen lots of differences, it could be another between UCLH / TC like the cyclo GCSF - maybe they do something else at TC initially and then only if you need it do they go there, whereas could be the first line for UCLH? 
Xx
@Byrnebaby @BloodCancerUK_Nurses lovely nurses would you please jump in on this, I fear I’ve inadvertently worried BB because of something I’ve been told, which may not be the same for her. Do most patients undergoing ASCT require a blood transfusion whilst in hospital? Thanks xx
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@Spangleystar honestly my lovely all is fine, I totally understand why that conversation happens and why the back-up is there x Thank god they have this technology to help us at our lowest, it really makes sense x I’ve made my peace with it x and I’ve spoken to enough people to know it’s all a process and will be ok x
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Thank you my lovely @Byrnebaby. I still would like to know if it’s standard practice in all hospitals- because if you didn’t know about it from all your connections, it makes me think it isn’t xx 
@Spangleystar i know people have had platelet infusions, just never thought of them as blood transfusions, i think it is standard practice for them to be prepared.
Not getting much pain from the growth jabs yet, so I hope they are working! Really not looking forward to collection day and not being able to move or go to the loo! Is that your cell return day too ? X
@Byrnebaby
Yes I guess it depends on what component needs the boost, whether it’s full blood or just platelets.
It’s great that you’re not getting pain yet - your dosage was half of mine over a longer period, so it makes sense that you’re building up at a slower rate, I bet you’ll feel something by Monday night, so don’t worry. Or maybe you’ll be really lucky and have no pain but a bumper harvest. My 4k spare have to go to the radar team so no back up if needed in future, which was disappointing but if it’s not enough, it’s not enough.
I’m expecting the admission call tomorrow. It’s my PICC and Melph day on Tuesday, so you’ll be on Aph day 1 and I’ll be on ASCT day -1. Hopefully you won’t need Aph day 2, but if you do that’s my day 0 xx
@Byrnebaby Collection days were fine, I was in a cosy side room with a heater and even slept for an hour or so while it was all going on. Yes I needed the commode on both days - but it was no big deal. You have absolutely 100%, got this! I want the news my lovely, please keep me posted xxx
@Spangleystar why do radar get the rest of the cells? Is it to test etc? Awww my collection is Wednesday! The day of your return! Well I hope I’m collected on Wednesday, all depends on counts x so they call tomorrow to confirm admission on Tuesday? Is someone taking you in? That’s a long journey x
@Byrnebaby yes I didn’t ask for specifics, it’s all for research so that’s good.
I’ve been told to wait for a call but then need to come in later that day. This is where not being ambulatory has drawbacks, it could be that I don’t get the call because a bed expected to become available, is still occupied and then I would still have to go up for my PICC appointment and potentially come home again if it’s still not free and then wait. So all my timings could go awry, which apparently wouldn’t have been the case if ambulatory.
My HB is going to drive me and the school is on standby to get cover if that extends to a different working day. Having to wait for the call means I can’t use my airport run driver, so no choice really, but I know I’m going to find it harder saying bye to him at hospital than I would at home, so not ideal xx
Oh yes I remember the count issue - mine were only 14.8 on Day 1 and they had to wait for the ok as 15 is the usual threshold, then the next day we had to wait for the count again because it was so low the day before and it was 18 so was good to go xx
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