@Spangleystar 
Day 55! it has flown past! Can’t quite believe how quick it’s gone, I’m eating, drinking as normal, tum still a bit iffy occasionally, hair has started growing back , my combover has disappeared 
I have a phone consult with my consultant on 27th, bloods a few days before that, but not been in since 16th July x so no idea how my bloods are 
won’t actually see consultant until after BMB mid sept, that’s playing on my mind a bit, plus had a total loss of identity this week, how do we even start buying new clothes for this new stage? 
aww you deserve that break! It will be lovely x have you been easing back in to life in general? X
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Yay sounds like you’re doing great lovely @byrnebaby.
I was dreading my last BMB because of the awful experience previously and 2 failed attempts to trephine. This time it was amazing though and completely painless, so it is possible!
Back at UCLH on Weds for final discharge but don’t think I’ll know what’s next until next Tuesday, so we will see.
Continue to embrace the freedom from treatment.
What do you mean by identity crisis and clothes? Aside from looking like Sigourney Weaver in Alien whatever number, I don’t think much else has changed for me xx
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@Spangleystar
Still not high enough on the protein/lightchains
I have had new pain and have a full body MRI being booked for two weeks time to check my hip pelvic area
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Oh @2DB difficult day 
how are you feeling in yourself? Xx
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Hi spangles
I feel ok about it all. I have plenty of options available if the trial doesn’t go ahead
So many new things are coming along sometimes things happen for reasons
To be honest I dont want to break my hip or get fractures either
The trial is still on the table if all is ok with the MRI
I have to have a full body scan for the trial two birds with one stone as they say 
x
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Aww welcome back @Byrnebaby, so lovely to read how you’ve been doing. I hope there’s been no more wildfires near you, although they’re a little more expected when in drought 
So you’re over halfway through those 100 days, congratulations! I’m really glad that your eating is mostly normal, what a relief. Perhaps, 3 years on since my own diagnosis, a change to our identities is to be expected? All the stress we’ve had to balance is bound to alter how we see stuff, including ourselves. I wonder, what would you go back and tell pre-transplant you about now, if you could?
Thank you for asking how I am, so thoughtful It happens to be time for my now-quarterly CBC to check if I need blood removing, and results have come back already showing that I don’t! It’s a strange sort of relief that daily chemo is keeping my blood cells in their normal ranges 
Hey @2DB, I’m really sorry about those test results being different to what you hoped for. I’m especially sorry that you’ve had a new pain. Thank goodness you’re getting it checked soon, and I like your attitude about it being like two birds… Please keep us posted. Don’t forget we can call the Blood Cancer UK nurses with medical queries 
Sorry to read of that BMB dread @Spangleystar, no wonder after those failed attempts!!! I wish there was a guaranteed painless way to check our bone marrow. Thank goodness your latest one was completely painless. I’m really so pleased to that you’ll be discharged this week—is this when they ring a bell?! I’d be mortified if my specialists drew attention to me on the ward like that 
You have absolutely earned an amazing send-off so relish it all!
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That’s my girl, love it @2DB xx
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Yay @Duncan here’s to no blood removal for you! 
No my discharge is simply the end of 100 days, a hand off from one hospital to another, still marks a milestone and I am proud of how far I have come.
I’m conflicted by the bell - delighted for anyone who gets to ring it but I feel a twinge of sadness whenever I walk past the bell - and I even had a dream where I was reaching for it and it was getting further away. That’s my subconscious reminding me there’s no cure I guess.
Ps I love these reflection question you pose, I would tell myself that I will be strong quickly after and to do whatever my body and mind needed to make sure that happened. I went through too much post Stem cell transplant guilt about not being as capable for a few weeks xx
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I’m proud of all of us
Even through the blips and how we get through them. Supporting each other makes me proud
@Spangleystar would ringing the bell for getting through the transplant/100days/MRD work for you. I’m sure the nurses will make that happen for you. The bell can signify whatever meaning you attach to it.
I haven’t personally rang the bell never really thought about it.
May today be kind to us all and may we see the tiny glimmers and the small stuff
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Oooo I just had another thought @Spangleystar spangles
We could buy our own hand bell and share each treatment journey with our family
Or a singing bowl
Or a counter bell 
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Hi @Byrnebaby
Hopefully enjoyed your break from the forum.
Yes still enjoying plenty of walks.
Hopefully your recovery phase continues to go well
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I got to ring the bell when discharged from my Transplant @Spangleystar
That was to signify end of that phase of my journey not that I was cancer free.
Maybe ask the Nurses if ringing the bell to acknowledging reaching 100 days post transplant might be an option as @2DB says
Take care
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So good to hear from you and to get an update. Sending lots of love your way x
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I’m ringing my own bell today .
Yesterday’s trip to UCLH was all ok, final sign offs/questions and handover back to Worthing. I have to give kudos to such an incredible team there and aside from the awful travel time, I couldn’t ask for better, it is an unreal hospital.
This morning I had a call from Worthing, they gave me my BMB results ahead of my Tuesday appointment. I am delighted to say that I am currently MRD -ve and have been told I had a complete response (this was heavily caveated with ‘sometimes people slip into VGPR after a complete response’, but nothing’s stealing my sunshine today!) I will start Isutaximab in a few weeks time, I need to read up on it but I think it’s a lot gentler and less likely to need support meds.
Wanted to let you lovely people know as you are all so special to me and have been such amazing support throughout. Thank you @Byrnebaby @Ceri_BloodCancerUK @Erica @Duncan @DuncanB @2DB @judesadventures @Nichola75 @jules and anyone I’ve accidentally missed xx
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@Spangleystar this right here has made my day/week/month. May today officially be the start of a new chapter and set of adventures that reflect complete remission and a continuing healing process that is filled with kindness, love, laughter, health and happiness.
Whilst not really the kind of terminology I like, you are an inspiration..I can’t think of any equivalent term to sum up your strength, your focus, your patience, your ability to sit with big feelings and emotions and demonstrating you are not enslaved to them. And all of it, in my eyes, done with grace, compassion and always keeping others in your sight. Today’s news being another example of that. Grateful thanks to have ‘met’ you on here - I know I’m better for it. Much love x
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Awww spangles that’s fantastic news I’m so pleased for you
Ring that bell 
Awwww brilliant 
Much love
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Ding Dong that’s amazing news !! 
all those good vibes you give out have come back to you 
a good friend of mine went down the isa route and at the end of the 12 cycles was randomised to no treatment- here’s wishing the same for you 
@Spangleystar
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@Spangleystar I am so indescribably delighted and over the moon to read your news. Really, I’m at a loss for words. Ring that bell as loud and proud as you like!
I’m sure the whole thread will be delighted to see this, as all of us in the Support Services team are. As Jude said, day/week/month truly made!
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That’s so good @Spangleystar ! Thank you so much for sharing. Thinking of you and your family. Willow x
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