Great to lose the allopurinal that was the one that made me feel grim, and I found it hard to swallow. Please let me know how the appointment - especially the Z infusion goes, I’m a little apprehensive about that one (mine was delayed because of Radio). My bruising and bleeding has settled a bit - I don’t know if it’s because I’m adjusting to the apix or I’ve been luckier with nurse technique!
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I noticed you said bloods weekly? Mine are 3 weekly- is that another difference, if so we should move you to West Sussex (only a little commute 
) before you end up all colours of the rainbow!
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Probably technique! I was told off for getting there at 3:55 as the girl goes at 4! No one had told me! And she just happened to leave at 3:50 yesterday, so they had to look for someone to do it, as it was needed to approve my drugs for tomorrow, and the woman wasn’t happy, so hubby will have to change a few hours around now to get me there earlier, it’s ridiculous! But they are helping me live, what can I do? 
I’m a bit weary I this one, nurse today said, I’ll probably feel a bit fluey after it, and I’ve read to drink plenty of water before an after to help the kidneys x
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Oh please do! Yes every flipping week! It’s not good 
causing hubby no end of hassle chopping and changing hours to get me there x
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We book our own appointments for bloods, so am able to manage it better, is there a way you could ask for a regular time slot that works for you both? I find my Trials team super helpful in getting stuff like this done, see what they say? I asked if I could get them done at my GP surgery (5 min walk vs 2 hour round trip in the car) but because there are trials bloods that need to go to UCHL it was a no. They did agree that I could do bloods on same day as consultant though (Tuesday) and also pick up my meds for the next cycle - which makes it a lot easier both as it consolidates 4 trips in one week to two (I have to start the dex very early on the Thursday morning to have any chance of sleep - so I’ve had to pop down on the Weds for pharmacy too!). Keeping my fingers crossed for a gentle nurse for you today xx
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Hubby brought me brekkie and Dex in bed this morning at 7, took them like a good patient 
thought they were a lot smaller than last week in the hospital, when I came downtown, looked at box and they are soluble and should be in water! 
so at least I know got next week 
we can’t book bloods, it’s a matter of turning up and waiting till number is called, hubby going to go in early on a Wednesday, so he can finish and get me there for 3:30, I’m only seeing consultant every 3 weeks I think, so on that day I’ll get patient transport in, and hopefully as it’s a Thursday they will let me do that’s weeks bloods on that day 
I don’t want this to take over hubbys life, it’s bad enough it’s my every heartbeat, I want him to still have his time and be able to do his hobby if fishing, I’m not an invalid, and hope never to be one, I want this treated as manageable and not ‘everything’ you know? I know there’s choppy waters ahead, months, but hopefully things go back to normal-ish after these intense months? Is that your thinking too? Hope you are doing ok? Xx
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I survived!! 
it was easy, went in, hooked up for 30 minutes, given an anti-sickness tablet, that I had to have 30 mins before cyclo and bortezomib, and absolutely no bruising 
they were disgusted with my arm x hope you are keeping ok xx
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Yay!!! Things are looking up BB xx
Lots of suggestions on a fb group, to hydrate really well day before and day off, apparently helps with the bone pain and fluey side effects, I’ll keep you updated! 
oh and temp can rise a bit xx forewarned is forearmed!! Xx
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How are you feeling today lovely? Yes please share any tips from fb - I did try to join a group but had quite a weird hostile experience (asking me how I knew someone that I didn’t know and wasn’t connected with who was a member of the group and evading someone else’s privacy in the process - as well of a ton of questions I felt were intrusive after outing someone else’s details on the group before accepting me as a member!) and so withdrew my request. I’m hugely mistrustful of social media (it’s 25 years working in IT that’s done it!) xx
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Was it the UK MYELOMA SUPPORT GROUP? I know they asked me a ton of questions and wouldn’t let me join until I had a firm diagnosis? Yea, any tips I’ll send your way star 
so, last night I did feel grotty, had to take time to stand up etc, pale, went to bed and thankfully slept it off, one think I’ve noticed this morning, but I was having a crumpet jaw aches slightly, so maybe a soft diet for a few days after the infusion, it does seem to interact with everything else on that day, still no bruising where cannula was, but I’d drunk that much my veins wher popping! So lovely, drink drink drink, as I think it has helped and gets those kidneys working to dispose of all the gunk 
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I don’t want to name and shame as they were apologetic when I explained how I felt, but it was too late the tone and data privacy issues had already concerned me. I think having the medical expertise through this forum as well as the overall setup and privacy of it is better for me. I will take tips though
I am drinking gallons at the moment- the meds make me so thirsty, having to alternate water and some cordials to cover some of the after tastes of meds - do you get that? The other thing that works is sugar free mints!
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Ohh good idea on the cordial! I’m finding the meds easy to take with a glass of lukewarm water, so add juice to that and it would make a nice change to tea! That’s the only thing that tastes weird, are you up more of a night to wee? 
I’m every 1 1/2. -2 hrs, at least it shows we are shifting stuff out? I think I joined too many groups and had information overload, so the plan this week is to get through the dex down, get a bit more active, and stop being a baby! are you on cycle 2 now lovely? X
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Yep every 2 hours without fail! Last night I woke up at 12.30 and couldn’t get back to sleep - hubby was relegated to the guest room as he has a cold, so I got a cup of chamomile tea and popped a z pill, I only got 2 more hours! I just don’t understand why those sleeping pills do not work for me!
Yes the info that’s out there from other people’s experience seems so much more restricted than I’ve been advised to be. I guess it’s people at different stages in the journey. All I got was ‘life your life but avoid overly crowded indoor places like pubs’. I find it easier to ask the team and follow their advice - keeps it simpler in my brain as it’s relevant to me and I’m realising quite how different we all are on this journey.
Cycle 2 nearly done now! Bloods and Consultant on Tuesday - Cycle 3 starts Thursday. Looking forward to my blood results - I’m such a data nerd and am feeling positive xx
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I’ve been lucky enough to be able to get back to sleep every time 
and I’m not tired in the day, which is really good x I’ll have to try the chammomile! Yes I think we are on a very different trajectory to a lot of people, more target and intense isn’t it? And the care is great, I’m trying to think of it more now as a ‘condition’ not a death sentence, but only time doubt creeps in is when I’m thinking of the next couple years, we want to downscale and get a dog, great motivators! But when Dex creeps in I’m scared it’s just a pipe dream, but I’m a whole lot better than last week! And I can live without pubs! I went to Tesco at 7 this morning, wore a mask though, and it was ok, do what we can to get through isn’t it? Wow stat you are flying through this!! Will be interesting for you to get your numbers! I’m like that too, want ALL the info! poor hubby though relegated to the guest room! Mine works in a holiday park, which is closed at the moment, but not looking forward to the season starting, with all those snotty noses around! but at least it will be summer when we both get our Stem cell transplant I think? Good time to recover x
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Mine is a primary school teacher so it’s day in day out snotty noses! He’s always come home and jumped straight in the shower and seldom catches anything, but with 3 of them at school everyday it won’t be long before I catch something! I think my ASCT is spring - somewhere around end of April /beginning of May I know they’re requesting the dates next week. I’ve booked a wig consultation in Feb too I was surprised on the wait time for that, couldn’t get an appointment for over 3 weeks - not that I’m in a rush, but I’d assumed I’d just be able to get one within a week. Good thing is plenty of notice means my bestie can come and give me honest opinions! I’m trying to think of it like I’m a movie star and in a costume for a while
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Gosh star! that’s coming around quick for you!! You’ll have to keep in touch when you are up to it! Aww you will look like a movie star! All those different styles! I think I’ll just wear scarves, go for the gypsy look and I’m going to buy a bright red lipstick to wear every day in hospital oh yes it will be difficult for you with the kids and hubby! I think mine will be June, I’ll be in Manchester, I think its around the date I should have been going with my son and his fella to see Take That!! So disappointed 
looks like we’ll have to sell our tickets 
apparently No7 at boots give free makeovers to people undergoing treatment, through MacMillan I think? Show us how to do eyebrows etc, so may be worth us looking at that? What colour wig you going to go for!? Your own or something completely different?
I’ve been watching so many tiktoks on eyebrows and makeup - I’m really pale with red hair and looking even paler right now so I’m putting on makeup to look a bit more healthy and had forgotten how to do it I’m not sure about the wig I need it to look natural, so we’ll see! Great tip for the beauty counter, will definitely look at that! Oh shame you’ll miss a gig, hopefully your son and his partner can find someone to take the ticket. I haven’t cancelled our holiday yet in August- booked it before diagnosis, when I just thought I had disc issues, but I think flying germ cabins will be a bad idea post ASCT, so I’d better do that…
I’m enjoying make up free time! And saved a fortune on getting my hair trimmed, I mean, really, what’s the point at this moment in time? I think I’ll have to re-learn make-up skills as I haven’t bothered for ages, so
I’ll be after pointers from you ! I’m on a dex diwn again today and it’s awful, but I’ve stayed away from Google, hope tomorrow goes well for you star xx
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Oh no, that pesky Dex, hoping it’s a little less intense than it was last time for you? I went to a gentle yoga class today, youngest by 20 years and definitely the worst in the group! Prior to my bone pain I was super supple, but the 5 months before radiotherapy has really taken its toll, it was so hard, I was shaking 
but I’m sure that it is all steps in the right direction to recovery…
So Mondays are a bad day for you in the cycle - Is there something you can plan for next Monday? Anything you enjoy that takes your brain elsewhere? Xx
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