@Spangleystar only 14 days now star 
that seems to have flown by! Maybe not for you, but for us watching it definetly has! I’m stealing your mantra 
especially after this week! I bet you’re looking forward to that break, enjoy it and get your best ready for when you are home, I’ve had no results yet! But in with consultant tomorrow, and to see if I can start cycle 3 
keeping going lovely x
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Do ask your consultant about your paraprotein and light chain numbers - may just give you the boost you need to power through (once the reactions are calmed anyway).
It has gone quickly for me too honestly and so I feel less dread about ASCT because it may be horrendous, but it also has an end in sight.
We have actual blue sky and sunshine in Sussex today 
spring is coming 
xx
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@Spangleystar weve had a bit of blue too! Lovely to see so many birds flying about as well, yes! I’ll be asking many, many questions tomorrow, I’ll be disappointed if it’s paused as apart from the rash, I had a really good week last week, but I’ve started doomscrolling again over the last few days, and it’s out me back a bit, 
anyway everyone here knows now, and the kids are keeping in contact, just don’t want to blight their lives with it x
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@DuncanB Oh Duncan it’s been so itchy! They’ve dosed me up on antihistamines every 8 hours, thankfully just took the last one, see what tomorrow brings when I see the consultant, this all still seems so surreal, I’m sick from the meds not the disease, will it ever get better? I’m reading no on Facebook
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Thanks @Nichola75 its easing a bit today x
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Try not to get too despondent @Byrnebaby
Facebook is great for sharing but so easy to get caught up in the it’s all great or all gloom cycle.
Think reality is that it’s going to be a bit of a rollercoaster at times.
Remember too that everyone faces different challenges as every one of us with a blood cancer is different
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Put your phone down - go and sit outside in nature, listen to the birds, have a cuppa and just breathe. I’ll do it with you! Xx
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Great tip @Spangleystar
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Been given the go ahead to start cycle 3 tomorrow 
we will know over the weekend then if it’s the Len causing the rash, made consultant very aware today of how I felt left down last week, reported condition weds & thurs and no meds till Friday, also they changed. My co-trimaxazole to this awful yellow medicine, they is making me feel Nauseous, it can’t be used with the metochloromide and I had to ring them and tell them! Got the new tablets yesterday but was left without for 5 days, I feel donkey diwn by them, I asked what would happen Ig I had a reaction again this weekend, said to phone triage and the on duty haematolog would be made aware beforehand, just in. Case, feel a bit vulnerable if I’m honest, I’d hate for anything major to go wrong, as they said today, you didn’t end up
In hospital and it’s only a rash 
Anyway, the good news >>
Blood results after cycle 1
FLC gone from 375 - 52
Paraprotein gone from 32 - 25!
So that’s a win, forgot to ask about my albumin, as that’s what kicked me over the line to standard risk level 2
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Some positive news for sure @Byrnebaby
I know rashes can be common with some medications.
Others I know had issues with rashes and definitely challenging to deal with
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That is a really great response - an 86% reduction in light chains! At least I hope my maths is straight there, I’m dex wild! So really brilliant news considering you’ve done a second cycle since then. You could already be in the normal ranges!
Really hope the rash gets under control soon. Being uncomfortable in your own skin is deeply unpleasant- I would expect a bit more empathy from your team ideally.
Don’t worry about the 5 days without Co - it’s pneumonia prevention and you’d know if you had it! I don’t take the met anymore- I found it gave me migraines and so I eat pears and drink iced water to calm the nausea - could you try to find a food/drink that helps in the meantime?
You know I love a quote so here’s one for today. ‘Those who bring sunshine into the lives of others cannot keep it from themselves’ J.M.Barrie. Maybe planning some random acts of kindness will give you something positive to focus on, it seems like you’re struggling with positive energy for yourself, caught in the doomscrolling web - so could focusing on bringing someone else joy work?
Xx
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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 know I will need to eat to get strong
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Hi @Byrnebaby
Lots to think about before transplant.
Are you having donor cells or using your own?
I had a donor (allogenic) transplant.
It sounds like lots of things in hand regarding your home.
What I would say is there’s a balance to be struck.
I was in hospital for 9 weeks for transplant.
As the transplant centre was 250 miles from home my wife stayed in an Airbnb near the centre.
We did a clean before we went down but while away her best friend came in a few times a week to water the plants.
So house being clean even if not to your own higher standards is fine. I clean at home a lot of the time. My wife would be much more thorough but she’s happy with what I do.
In terms of food you will have the dietician in several times and you should get a document telling you what you can and can’t eat.
When I was on the Transplant Ward, the Hotel Services guy was brilliant at saying what was better than other things. Remember too that they have different menus including lighter options.
I quite often had the pasta dishes plus chicken, jacket potato and even scrambled eggs sometimes.
I tried to make sure I had a hot pudding as its a good way of getting calories in.
My wife brought in some fun size chocolate bars which were good with a cuppa.
Also had some bags of crisps.
When home you might find your taste changes for a bit. I found I struggled with spicy foods initially even though big part of normal diet.
I do most of the cooking at home but struggled with standing for a while after home so had to rely on my wife.
Batch cooking definitely a good idea.
Eating out pretty much off the table for a while. Carvery and salad bars are a definite no go as are takeaways.
If doing salad make sure everything is really well washed.
Hand washing really important. Have hand gel with you and when go to outpatient appointments wear a face mask.
At my local hospital where they share care with Transplant Team they had a room where those in post transplant recovery could sit so not in the main clinic waiting room.
In terms of defrosting food do it in the fridge. I usually take whatever I’m eating the next day out of freezer and into fridge.
One final thought. Be guided by clinical team rather than Google as everyone is different and Google advice is generic.
Hope that helps and if you have more questions just post them and I and others will do best to help
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Thank you so much @DuncanB thats really helpful for me, some good advise there! Is eating out etc un advisable long term or just until we’ve had vaccinations and built up a bit of immunity? My daughter’s Christmas buffet may be off the table then! 
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Hi @Byrnebaby
In terms of eating out not necessarily going to be off the table for ever but while your immunity compromised have to be really careful.
Avoiding busy periods definitely recommended. If you can go to places where you know food cooked fresh that helps.
Christmas a long way off so can’t say what will be okay at that point. Just explain to your daughter what the situation is.
I was scheduled to have bulk of vaccinations at 6,7 and 8 months post transplant.
However delay in COVID and flu vaccinations and weather meant it was 10 months before they were completed.
I know from a relatively recent CD4 blood test that my immunity is still low. Consultant said that it can take 18 months to 2 years to recover and that some never fully recover.
It’s really about being sensible and weighing up risk
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@DuncanB this really, really is life altering isnt it, I’m trying to take it’s ok in , the scope of everything, and my hubby is , you’ll be ok,this time next year you’ll be back to normal, he has a ‘sweep it out, if it comes back, sweep it out again’ attitude and is planning our hikes and getting me to go fishing with him next year, can’t tell him enough I may never be me again, and it’s causing such a deep sorrow within me 
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It certainly changes things for sure @Byrnebaby
Way I like to think about it is you will have a new normal which may or may not be different to now or at time of diagnosis.
It will be very difficult for your husband too.
Perhaps his future planning is just his way of coping
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@DuncanB oh gosh, I appreciate how tough it is for my hubby and kids, they are my every thought through this ‘life’ new life and old life, I’ve lived for them , the reality of what I’m reading is just killing me
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I think it’s really hard for those that support us through our journey @Byrnebaby
As patient we at least have some influence and at the same time a lot we can’t control.
Remember too that there is help and support out there if it’s of interest to them.
Maggies is a great example of that as they can just pop in and have a cuppa and say as much or as little as they want
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Is it usual at this stage of induction (cycle3) to start feeling a bit more tired and unmotivated?