Yes - mine are a bit shy - I was stunned that they took 10 vials from me at my last UCLH appointment! Keeping warm and plenty of water is all I know, so would also be grateful for tips
I was told by the CNS - don’t let anyone go in these veins between harvest and transplant. Which was good as I was booked for zometa a week before transplant and the doc then said to cancel it until post 100 days. So shouldn’t be any need for bloods or infusions xx
Morning @Byrnebaby
Am I correct your having the Hickman for stem cell collection and for stem cell transplant ?
Collection wise I wore leggings a tshirt and my hoody jacket. I slept a bit and had my phone to scroll.
Transplant wise I took a suit case as I was an hour and half away from home. I wore leggings and tshirt for the first few days then my pjs then hospital pjs as I didn’t want soiled clothes hanging around although my son was brilliant and collected anything that was.
I slept most of the two weeks managed a shower before I left and wore legging and tshirt and hoody home
Thank you for asking @Byrnebaby
At the moment I’m in a biochemical relapse. My protein and light chains are rising slowly
I have some new pain and going for a scan this week to see if my myeloma is active (I have boney disease) if it is I will have to start a new treatment
Oh @Spangleystar thats such a trek for you! Stress you don’t need on an already ready stressful day! Rest up as much as you can today lovely x I’m in for cyclo in the 28th, doing some research and it seems if you still have some cells after induction you get the cyclo, no happy about it, but what can I do next job is to sort our ehat meds I should/shouldn’t be on, but that’s tomorrows job, I’m at the Drs today x. Please rest up today and relax as best you can, and keep in touch x
@Spangleystar i think mine have had enough and gone on strike good call on the zometa! I’m sure I’m due it in the next few weeks, so I’ll say no I think x mine usually goes into my hand? Does your go in the arm? Always end up bruised gromit for about a week as well x god I hope the Stem cell transplant goes easy on us xx
Hoping all goes well this week and tomorrow in particular.
It’s amazing how treatment wrecks our veins. I was lucky in that my veins held up for a lot of the time.
I use to joke with the nurses that their favourite song must have been You’re So Vain by Carly Simon song (play on the spelling of vein)
As soon as I needed more intensive chemo put in a PICC Line. For my transplant it was a Hickman initially which they had to take out and then two PICC Lines.
I had a sleeve that I put over my PICC Line when showering and this worked well.
Hope you got on ok at the docs today BB. I cannot wait to get tomorrow over with my bones are close to exploding I didn’t expect it to hurt this much! I’ve got hot wheat bags everywhere and am taking paracetamol, make sure you’re prepared for this bit xx
Oh no star @Spangleystar I hope you managed to get some relief and sleep! You have quite a day ahead of you travelling and collection! I sincerely hope you get all you need today and can get yourself home to your family and your own bed this is it now lovely, after a few weeks of test and now today, hopefully you are done with hospital until Stem cell transplant day xx I dint know if you have your date yet xx good luck today sweetheart x.
@Spangleystar they haven’t been mentioned to me?! I’ve now got - bmb 15th April, echo/ecg 16th April, and lung function 16th April, see my local consultant 24th April, Christie 4 bloods 25th April, Christie 4 cyclo 28th April, so I’m guessing only the kidney function to do then? I think I’ll need the break when I’m in for Stem cell transplant?!
Ahh thanks @Byrnebaby. Well despite the 3litres of water I drank over the course of yesterday and the 1 litre already today, my left arm just isn’t playing, so I had a femoral line and am up and running now. Despite really not wanting it - it’s actually better for me as both of my arms are free and I have a blanket over all the tubes so am not grossed out by the blood flow in and out and can pretty much forget they are there. Now to hope for collection of 2m today! If not they keep the line in and keep me overnight and collect the rest tomorrow xx
Oh my dearest @Spangleystar you keep shining bright sweetheart you are doing amazing and an inspiration to me xx you squeeze those 2 million out and get back to your family x yes, always an upside! You can use your arms and hands now and use your phone x I hope they are giving you superstar treatment xx snap! In hospital together as my collection day is planned for the 5th May!
I could kill for a cuppa but aside from that I’m well looked after when you go in for Apheresis take some layers- I’m grateful for my poncho as they put me in a gown and it’s surprisingly cold laying around doing nothing! Xx
@Spangleystar i hope they’ve given you a cuppa by now and you are happily filling your bags with strong cells x are you watching tv or anything to keep you occupied? I hope you can concentrate on the rest of your week and have some nice walks and go to the shops maybe? Get out of the medic rut for a while xx Compile your shopping list of must haves to take in~~ then share it with me!