The thought of ASCT is clearly messing with your head (mine too to be honest, although I am certain it’s the right way forward for me, so I’m trying to compartmentalise it), I think you should remember you get to decide your treatment pathway and have to give consent for ASCT. Would you benefit from talking to another doctor outside of your trial team for a second opinion, would that help? Sometimes the feeling that this is being done to us, rather than something we have control over is the hardest because so much trust is required - could that give you a broader view? Xx
I’ve been keeping my hand in about 5-10 hours a week with a few key members of my team - but I do miss being in the thick of it. Won’t be forever and as I’ve mentioned before I have to learn not to be so consumed by it all first!
@Spangleystar hope you are doing ok, has your induction ended now? Prep for Stem cell transplant and after going well? I’m trying to plan what and how much clothing to take, and what nutritional needs will be after Stem cell transplant, hope you doing ok x
No still on induction, but the end is in sight! Last len tomorrow and then last dex/ borte on Thursday then just the week of support meds until I find out what I need to continue taking. Obviously zometa still runs.
The only prep I’m doing for ASCT is ensuring I’m as fit and healthy as I can be. I’ll wait for my first face to face appointment on 2nd April to figure the rest of my hospital kit out based on the information they provide.
I started to think about some of the coming home readiness too but the reality it’s still a while away so the things like deep cleaning, carpets/curtains etc for coming home need to be done when I’m in hospital (or done and redone which feels unnecessary) So I’m doing the professional cleaner research and creating a list for my lucky husband to action while I’m out!
Most of the time I’m choosing to let the thoughts pass right now though, trying to get comfortable with the uncertainty, because that’s life now xx
Not long then! It will be nice to have a break and recuperate a little won’t it? I’m getting all the big cleaning done before I go in, got a professional carpet cleaner booked, and hubby and I do the rest in the weeks of lead up, as long as I come home to brand new, fresh bedding I’ll be happy, it’s tough for them too isn’t it? Being in work all day and away from us for a few weeks, yes life is full of uncertainty now for us, and I guess will always be and we will be fragile for quite a time x so many rules to live by x hope you can stay as positive as you always have been x
Trying to look and plan ahead to when I’ve had my Stem cell transplant, I’m 8 weeks through induction on Friday and will have 4 left (hopefully) if things carry on in a straight line!
We are preparing house to be Stem cell transplant ready, dehumidifier on clearing any condensation/mould, hubby will be replacing all silicone around windows/doors, re-decorating and treating hall that has condensation spots brought on by this damp, dreary winter, professional carpet cleaner booked for the main areas I’ll be - living room, kitchen, hall, main bedroom, I’ll be doing all curtains, nets, soft furnishing about a week before I go in, hubby will put brand new duvet, pillows and brand new bedding on, the morning of my return, and obviously clean bathroom/kitchen- to his level, probably won’t quite be mine! But he will also be working 40hr outside, manual labour until I’m home, then off for 2 weeks!
Is this enough? What do we need to have in nutrition wise? I’m very picky as it is, and it seems most of what I currently manage can cause me problems in the 100 days!
I like ham, but google says I’d have to eat the whole pack in one day, not over 2 days? If I eat chicken it has to be freshly cooked, no cold cuts the next day? I make my own soups and turkey burgers, and then freeze, it’s saying I would now have to defrost before cooking? What sort of foods are best to have in, that are safe and easy and I just don’t have to think about them, but can get that vital nutrition in? I’m not really into the additives stc in protein powders, thanks for any input, really appreciated, I also know we may not want to eat a lot, but I also know if I don’t eat I won’t get stronger
I can’t answer but maybe save these questions for your medical team at your first ASCT hospital appointment - you’ll have at least 4 weeks between that and hospital admission and then you won’t spend the next 3 months obsessing over every little detail xx
@Spangleystar im just trying to be prepared, helps me to stop thinking of all the bad things with this disease, feel like I can gain a tiny bit of control of my life xx I will ask the questions of the team, but no harm in asking peoples lives experience, even though we are all going to live it differently and experience different journeys xx
BB I know 100% and no need to apologise- I’m not mad at you either so hope that didn’t come across like I was- I understand we process and deal with things very differently, what you see as trying to feel in control I see as using worry as a tool like in that article I shared and it’s not somewhere I want to be. Because our handling is so different I feel you are throwing up tons of other things to be scared of, that I’m doing just fine without thinking about and potentially will never need to. I don’t seem to be able to unfollow this thread anyway! I’ll just practice scrolling past xx