Thank you @Jules! Great post xx
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Also @Byrnebaby I wondered if you’d spoken to the team about other options ? If the ASCT and the lack of immunity feel too much for you - there are other treatments. Very weirdly my next door neighbour a lovely lady just turned 80 was diagnosed with MM a few weeks after me (what are the chances in a small village!) she is not having a transplant, she has been told there are so many other treatments available and is doing well.
I’m not suggesting you should or you shouldn’t go through with the ASCT, only you can make that decision but exploring options is something that helps me feel more empowered in my decision making and you do need to remember it is your decision xx
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@Spangleystar hope you are doing ok lovely 
just thought I’d pop on and say hello 
I’m in a very weird anxious place at the moment, and I guess you will be too as you are that bit further ahead of me x
Well it’s all on my mind, but I’m remembering to breathe and use grounding techniques so generally doing ok - I’m just taking one day at a time and not thinking too far ahead. Today, yoga, tomorrow wig shopping, weds zometa, thurs consultant - then it’s Easter weekend so some family time away 
I try and find small things to focus on each day. Have you had any counselling yet? Xx
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@Byrnebaby have you got any nice Easter plans lovely? Will you be seeing your son & daughter? Xx
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@Spangleystar you have a great time away with the family, you deserve some down time x I’m trying to also get into a do one thing a day frame of mind, I’m still struggling, I don’t think that will ever change, and talking about it sooner help, I just have to put my big girl knickers on really, I have to realise my life has changed unrecognisably, grief and loss , and I just have to get over it for the sake of my family, and take what time I do have and not leave them with memories of a sad, unstable mum/wife
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Well also think about who you want to be, not just what memories you’ll leave them with, because you could be around for a very long time yet and you deserve to be happy. Don’t let Myeloma define you.
I refuse to xx
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Hi @Byrnebaby
Important just to take things a day at a time and not get too far ahead of yourself.
Whatever you do should be for you.
Understand what you say about big girl pants and remember too that dealing with your cancer isn’t like a decision to go on a scary fun fair ride.
Take care
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Hope you are keeping ok lovely x @Spangleystar could I pick your brains for a moment please 
I contacted my team today as I’m going to run out f meds before Stem cell transplant, they said the Christie might not have me on any meds at all leading up to transplant?! Have you found that with your team? Are you on anything now? Send weird to maybe not be on any of the protective meds when at our lowest points?
I’m still on Co-Trim & Aciclovir - the consultant gave me a prescription in my final appt. Have you had an appt or even a call with The Christie yet, can you ask them?
My white blood cell are still low (under 2) so I would think they would definitely want to keep you on some support meds for a while longer xx
@Spangleystar i thought we might still be on them x yes, 1st apppintment on the 8th April, have to report to Manchester, just hope there is petrol! 
hope you doing ok lovely xx
Have you got enough to last you until then? Tablets I mean X @Byrnebaby
@Spangleystar yes, I’ve got enough until then, was In yesterday for extra bloods and urine test, as really, really uncomfy down below, sent home and told to just monitor temp and take some cystitis relief, but. Still uncomfy x how you doing?
Oh that’s good then - they’ll give you more if you need them. Cystitis is the last thing you need right now! Unrelated or a side effect? Or is that what the tests are for? Hope you feel better soon xx
@Spangleystar don’t even know if it is cystitis?! Bloods have come back ok and urine sample was fine, so I’m doing the drink they suggested (bix says for inly 2 days) so I guess if it’s still there tomorrow I’ll have to get back to them, flipping uncomfy I know that! Niggly! They’ve just said keep an eye on temp, and I guess bloods prove nothing brewing, so just got to ride it out I guess x could be anything really, maybe age related as I’m in surgical menopause, but I don’t want to risk putting my creams there just in case it aggravates, they just don’t give enough info
Hope you get some answers soon xx
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@Byrnebaby just to let you know the ASCT consultant stopped my co-trix said I should only be on Aciclovir ahead of apheresis.
Hope you’re doing ok lovely xx
@Spangleystar thank you x rang haematology nurses earlier as haveca bone marrow biopsy on the 15th , letter say to check in if in blood thinners, have been in apixaban since the start of trial, I finish my lenalidomide tomorrow, and they’ve said from next Tuesday I can stay off them permanently? Are you off yours? Also I can come of the omzeprazole next week too? I’m just so confused re: apixaban, as she said as long as no clots are forming, how the heck would I know? 
Yes my understanding is that the apixaban was only required while on len. The omeprazole was because of the dex, cyclo and len.
Obviously clarify with your team but once you finish Cycle4 I was told they could all be stopped.
Your next bmb is the day after my apheresis I got so much info from the lovely team at UCLH yesterday about the next steps that my brain is melting 
@Spangleystar ohhh I bet you’re exhausted taking in all that info! There’s a lot isn’t there? I’m sat in gp out of hours, rung my triage and they sorted an appointment as this cystitis isn’t going 
I feel sooo uncomfy , feel burnt inside , you have to tell me everything you have learnt! And good luck for the 16th x