Hi, firstly I know this sounds like a ‘does my bum look big in this’ post 
but it’s a real question!
I’m in for Apheresis a week today. I was told you are connected through both arms to a machine so that you’re part of the circuit, that when you need to use the loo because you’re so connected that you’ll be brought a commode to use. Then I was told that tubes may need to go into my groin instead as I have little veins that like to hide.
I can’t get my head around what to wear to account for all possibilities- would love to hear from anyone who’s been through it.
I’m thinking short sleeves and joggers but putting a a dress in my bag just incase, is that overkill for a day procedure? surely they’d give me a gown if what I was wearing was a problem ?
Thank you xx
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Not sure what to suggest @Spangleystar but loose clothing should be a good option I would have thought.
Someone will help should you need to use commode for sure.
Your plan to cover all options sounds sensible and as you say there’s always a hospital gown if necessary
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Hi @Spangleystar, how was your Easter bank holiday?
This is a exactly the kind of practical question I was asking through each bit of treatment, so I completely understand. I went ahead and checked with our lovely nurse @Emma_BloodCancerUK and between us we’ve got a few thoughts.
The main thing is comfort - you’ll be sitting for most of the day, and the team will need access to your arms, so anything with sleeves that roll up easily (or no sleeves at all) is ideal. Depending on how you’re positioned, they may also put you in a gown. It’s also worth thinking about anything that might start to dig in after a while - waistbands especially can become uncomfortable over a long sit, so loose-fitting or elasticated options are a good idea.
Emma mentioned that a dress or skirt might actually be a practical choice - toilet trips during apheresis can be a bit tricky, so having less to navigate is helpful.
It’s also worth packing a warm layer like a cardigan or zip-up, as the process can make you feel quite cold, and wearing comfortable slip-on shoes as well.
I hope that helps, and that it all goes smoothly. Do let us know how you get on?
Ceri - Blood Cancer UK Support Services
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Hi @Spangleystar
I had a Hickman line for collection is that a possibility for you?
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Thank you for checking with Emma @Ceri_BloodCancerUK. Really helpful. I’m clear 
Easter weekend was great! A few days of family time in a place the teenagers wouldn’t bump into loads of kids they know - because being with parents is beyond mortifying these days . The sun was out and the vibes were good! I hope you had a lovely Easter too xx
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Thanks @2DB - I was told Hickman lines aren’t used at UCLH anymore (for this anyway), so I don’t think so xx
We have an NHS constitution this is section 4 which you can use to back up your choice of a Hickman line
My first ever consultant told me to always advocate for myself
I have used this section a few times. I would also ask for it as a reasonable adjustment unless of course there is a reasonable reason why you can’t have one
4. The patient will be at the heart of everything the NHS does
It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers
This is UCLH latest information and they still do them
Thank you for the information, but personally I was relieved when she said they weren’t used as I’d rather not have one xx
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@Spangleystar with you there! I’m having a Hickman 
it’s the only way the Christie do it, x good luck lovely lady x are you allowed to have someone in with you for the procedure? X
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Yes they said I could bring someone, but I won’t be xx
Will that stay in from Apheresis until you are discharged post transplant? Do you have an approximate date yet? Xx
@Spangleystar I’m with them in the morning for our 1st meeting, as far as I know, from someone who has just been through it all there, the put it on admission morning , tben then the high dose chemo, in the afternoon, next day is off then the next is cell return day x have you had the high dose cyclophosamide? Some do and some don’t from what I understand x
@Spangleystar they all operate so differently! Again by recent inmate 
they weren’t allowed anyone x I’ll be mostly on my own through it all as well x did you choose ambulatory in the end?
So I guess you may have it for Apheresis, or they may put in a couple of weeks later when you go back for ASCT , depending on what admission morning is referred to. Good luck later lovely, I did get a little teary with my consultant as it all got very real, but he was the kindest doc and I quickly calmed, realising I was in good hands. I have another appointment today (online thankfully!) then I have a prehab physio online session on Friday, so a pretty chilled week - injections aside! Xx
No to the high dose cyclo xx
I asked for admission from the start xx
If you don’t want the Hickman take 2DBs advice and ask for the PICC as part of section4 xx
Where are you finding all these recent inmates are you camping outside the Christie
Sorry?! The consultant said ‘sometimes the worst happens’? What the actual ****?! Where did he learn his bedside manner, prison?! Are you ok BB ?that’s a lot, a whole lot xx
I will get an infection, and sometimes the worst happens 
tried to push hotel for 1st week, but I’ve insisted on being admitted. X