The treatment plan is belantamab/velcade/dex if I’m accepted onto the trial.
I’m hoping too that it will become available in the pathway for third line treatment in the future
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Keeping everything crossed for you my lovely @2DB xx
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Fingers crossed that you will be accepted for the trial @2DB
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How are you doing now @Byrnebaby ? I am pushing every last positive vibe through the universe at you right now. You can do this.
This will be a good thing.
I know it’s hard because you didn’t know you were ill but that just means it didn’t have time to do you permanent harm. Even if you can’t see it now (because it’s a frankly terrifying time), I hope you will see this treatment as a blessing when you look back.
With you every step my dear friend xxx
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They have just reached me, beautiful 
@Spangleystar 
I’m ok thank you 
you are completely right, and I have been treating this as a punishment ( Catholic guilt kicking in) instead of a step to a kick butting of this disease 
and winning 
How are you doing sweetheart? Ohh the nasal gel- have to use a gel in lower nostrils 2 x daily for 5 days, also hibiscrub for 5 days, so started today, I think it’s because of the Hickman on Monday morning ( well, it should be morning, but been warned there’s a Dr strike on, so it could go a lot slower) whatever, I just want it done now 
I’d like to thank each and every one of you for being here for me during the last 6 months x
@Spangleystar @2DB @DuncanB @Duncan @Ceri_BloodCancerUK @Jules @Erica @Willow @Nichola75
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Hope you can get on the trial, lovely @2DB thinking of you xx 
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Thank you you lovely lot
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Go go @Byrnebaby wishing you all the positivity
Kick that myeloma back into sleep mode
You can do this and we are right here for you
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Sending you love @Byrnebaby. Thinking of you very much. Go gently and softly with yourself. Willow x
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You are most welcome @Byrnebaby
You are surrounded by people here on the forum who really get it.
Take it hour by hour once you’re admitted.
There will be challenges and know that you and your clinical team will deal with them.
Take care
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@Byrnebaby The support doesn’t stop now, you shout for what you need and when you need it. Don’t forget @Ceri_BloodCancerUK ‘s reminder of the telephone number to call for further support as well. Remember they have medical knowledge and can answer questions we can’t.
You’ve got an army with you sweetheart xxx
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How are you getting on lovely @Spangleystar has hubby recovered from his bug and hope the rest of you didn’t catch it x I’m doing my packing today and taking my hair a lil bit shorter, hubby at work, so a lot of time to ruminate but I’ll try not to overthink things today x
Hope you are having a peaceful recovery
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Pack your scissors too @Byrnebaby - a few days before the mass exodus of my hair my follicles were extremely sore and taking the hair down on top from 6cm to a couple cm relieved the pain from general movement of them.
Yes I’m doing well physically, we all avoided the bug 
- but mentally it is a daily challenge to bat the thoughts away and push my intentions. It’s a combination of slight cabin fever (can you believe it is day 39 already!) - being alone with your thoughts for a lot of the day and being too tired to do much to distract yourself from them. I’m well though and I’m stubborn so my intentions will win out - until then is left ear / right ear tennis 
xx
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Day 39 @Spangleystar wow! Where has that time gone? It doesn’t seem that long!
Yes, it’s a battle with thoughts when we are home alone for so long isn’t it? I loop round and round in circles in my head and completely exhaust myself, before even getting out of bed in the morning x
Is it anything specific or the whole process we are now in that has you like that, because it’s really enormous isnt it I’m hoping in time it will just be ‘there’ but not ‘everything’
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@Byrnebaby It’s been two things buzzing around that make me nervous 1. both MYC rearrangement and light chain only are more aggressive subtypes. 2. I’m not going to lie your relay of the Doc’s ‘15 year’ comment gave me the jitters too.
However I think I’ve finally put it to bed now after Copilot has explained it properly. Essentially MYC is aggressive with lambda locus, mine is kappa restricted, and so far the Light Chain only hasn’t caused Renal issues, which is why it’s typically more aggressive. As for the 15 years, I don’t and won’t believe it to be true for either of us, but still it really annoys me that a doc has said that especially at a meeting with that bloody consent form. I don’t want you to go into the next stage believing that to be true for you either.
Remember this - neuroscientists believe that only 10-20% of the brain’s function is fully understood. Who’s to say that the power of positive thinking in terms of recovery isn’t part of the 80% waiting to be understood. Visualise wellness, visualise you living your best life. At worst it will give you respite, at best recovery.
YOU HAVE GOT THIS 
xx
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Great advice @Spangleystar and so true.
The network here on the forum is here to help @Byrnebaby whether it’s music, virtual fresh air, photos or a quote or poem just ask and we will all do our best to respond
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I’m sorry I put that thought in your head I wasn’t thinking clearly 
@Spangleystar
I’m packed but definetly not ready to go!
You had your line put in, in the morning and Melphalan in the afternoon? Did it run until late in the evening? Xx
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Thanks @DuncanB appreciate you all so much x
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Don’t worry lovely, I know what it’s like. I don’t think it’s necessary for Docs to say at this stage, even if you were asking they should just say everyone is very individual. You my lovely should stop asking though 
Yes my PICC went in in the morning around 9.30 and melphalan at 1.30, it didn’t run late.
I don’t think the Docs strike will delay you hugely - I expect all the meds are signed off already and the rest of the process was performed by specialist nurses. I hope you get a good night’s sleep tonight lovely xx
PS love the little goat 
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The day is here @Byrnebaby I hope you are feeling ok, jitters and heightened emotions all expected and you need no permission to feel however you feel and if you want to cry you go right ahead, there is no shame. Perhaps you are feeling nervous energy in a good way - a level of excitement because this is the start of the rest of your long life.
Whatever you are feeling this is for you, as a reminder that you can do anything xx
Sending so much love and good energy your way
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