That’s so good @Spangleystar! I am so pleased for you. Go gently. Thinking of you. Willow x
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That’s brilliant news 
those little babies are doing their work
You will recover better at home
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Thank you all so much. I feel so emotional, especially as the lovely family I’ve been so embraced by have had the news you never want.
@Willow you have an amazing way with words - do you know any poems I could share to provide comfort? Xx
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It’s been a real honour to have the opportunity to support you through this really challenging phase @Spangleystar and we are all here for you when you need us.
Everyone of us on the forum really get how difficult is dealing with blood cancer so can relate to all the ups and downs
Hopefully family ready to go into carer mode when you go home
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Oh @Spangleystar, such incredible news! So less of a long-haul than expected and perhaps more of a quick swoop over London and back home again… I’m really so chuffed for you, and thank you for sharing as I bet it’s also supportive for others.
I was going to share this image yesterday but it seems more apt now with your discharge imminent. I was lucky to be invited to an Indigenous ceremony where local people with literal Aztec heritage held a sort of public powwow celebrating cycles in nature, movement in fresh air, and being in tune with oneself and others. Even after all your efforts to move through these treatments you’re thinking of others and it’s really special 
Recuperate well at home, dear @Spangleystar!
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Well @Spangleystar 
I bet you are feeling a lot like this today, safe travels home back to your family x 
you really have been a through all this x
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Thank you all, I’m conditioned to 3am obs so have woken up 
but my bed has never felt so good. It was so good to see my boys (I include the hubs in that term obviously ) and the lovely Noodle - it was such a long traffic ridden drive out through London that by the time we got to Wandsworth I was hungry, saw a drive thru and ate my first hot food in 2 weeks - McDonalds fries Never saw that coming, but they were scorchingly hot and very salty and felt right in the moment
I had some Reiki on Monday, had never experienced anything like it I was getting these waves of colours purple and orange and white. Considering it was light touch I couldn’t believe how powerful it was. Then on Tuesday my N’s had another incredible leap to 3.67 so I left hospital not being neutropenic 
I’m so glad I found this wonderful group - it has felt like at times through the diagnosis that I have been pushed backwards off a wall, not sure where I’ll land. This group is like a trampoline covered in feathers, it softens the landing and springs you back up. You are all very special to me. Thank you xxxx
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The is home! That’s the very best news @Spangleystar what a fabulous leap in your bloods! Home and able to eat a maccies 
I must admit, I’ve said to my hubby. That’s one thing I will want once I’m out! Haha
apparently it’s very coming to be wanting salty food after Stem cell transplant, so stock up on S&V crisps! Hope your recovery carries on as well as your ‘holiday’ did 
we are incredibly lucky to have this group, and such a lovely, friendly, encouraging & knowledgeable set of friends x go rest! 
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@Spangleystar made my day to read you are home. I knew that, until you were, things could change in the blink of an eye. What an experience you have had up to this point, and will continue to have as you heal and move forward, slowly and surely. Maybe the odd bump on the way but knowing what to look for, who to reach out and where to get help will all be info you, and your hubby, will have to hand if needed.
If I may also say, we have 2 important hospital appts today and tomo which are causing much stress and upset in this house. It is all feeling big and heavy this week while I try to be everything to everyone I care for, along with significant work responsibilities. I have been so encouraged by your strength, your honesty, your ability to communicate and empathise and your ability to know levels of chat/info that work for you in a moment. Please know (without feeling any pressure from it, please) how this is encouraging me too. Thank YOU
Now onto new chapters with love, patience and grace from you to you - and with love, kindness, acknowledgement, strength, hope, positivity and encouragement from me and the others here. Always x
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Oh dearest @judesadventures I’m sorry you have a couple of big days ahead. I can’t believe you took the time to write and support me with all of this going on, so, so kind. I’m glad to have been able to provide some support.
Please now think of you, it sounds as if you are carrying the heaviest of loads. Nurture yourself to the same degree you would anyone else going through this. It’s time to pop your own oxygen mask on first, like they say on the plane!
Sending tons of positive energy your way xxx
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So pleased to hear that you are home.
Yes drive out of London is horrendous. Think I only did it a handful of times when lived in Hove
Your food story reminds me of the 6 hour drive on discharge day. Stopped off at a cafe in Dalwhinnie and had a bacon roll and a cappuccino
Hopefully you get lots of rest in coming days and take it easy. Probably running on adrenaline yesterday
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Sorry to hear that challenging few days for you @judesadventures and hope all goes well 
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Oh, dear @judesadventures ever since I have had the great honour of knowing you you have been ‘everything to all people’ you have never stopped coping with one challenge after another selflessly
You must be completely exhausted, with your batteries completely depleted.You know the theory far better than I do of ‘looking after yourself as well as you do others,’ but they are only words, the practicalities and emotionally stresses of everyday life are completely different.
Just know that I am always there for you and sending you a great big supply of virtual hugs.xx
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Oh, @Spangleystar and @Byrnebaby you are both part of our support forum family and I hope you feel that support, be ever so kind to yourselves as you have been through a lot medically, emotionally, physically and practically.
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Morning lovely @Byrnebaby How is the barnet fair?! Mine is a few wisps now. Incredible how quickly it’s gone and what a small head I have underneath every hat I’ve bought is way too big so it’s scarf time around the house. How are you feeling about it? I’m so grateful for the treatment, this now feels insignificant in comparison to the chance of a really long remission. Although it’s always been brows and lashes that have been my biggest concern, so far they’re hanging in there! How are you doing in general? Any date through yet? The limbo period is really hard, hope you’re able to just enjoy this time, although I know it can feel really heavy. Here for you whatever the weather my lovely xx
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Good morning my very special friend @Spangleystar thank you for checking in on me, with all you are going through yourself! I have to admit I’ve had an absolute massacre this morning hair wise 
so I think I’ll have to be brutal and chop it this weekend x I know you cut yours short before you went it, did you shave in there or have you just let it shed naturally? Sorry if that’s triggering for you x Have you settled back in at home now , I can imagine the relief to have that done and be back home is immense, even if you are just sleeping mostly x how are you?
I’m just killing time really, I want it to be done, waiting, with no idea of a date is just brutal. Need to really start getting stuff together to take in, but heart isn’t in it x any pointers in that direction would be gratefully received x when you are feeling better obviously xx
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That’s really hard still not having a date, bless you my darling @Byrnebaby . I know NHS is operating in very difficult times, but even if you knew when they were planning to admit you ball park that would really help you through I’m sure. Can you push for it?
Do you know if the cyclo knocked your last paraproteins out? If so I’d be a pain in their rear to at least get a date. Don’t forget your agency in all of this and say what you need. It may not speed things up, but imagine if it did!
I took in far too much in the end, but things I’m do grateful I took in were silk pillowcase, pillow and blanket. Lint roller - I’m still using it over my head daily as well as for tidying up. I took my hairdresser scissors in so I just took it shorter in hospital - it really helped with the root pain. When it fell it fell quickly- they had big bins in the room and I half filled it just with hair and lint roller paper on one day. You can ask me absolutely anything now - nothing is triggering. Just make sure you are ready for any answers to questions, because I know how I was in the limbo stage.
I didn’t once go into the tenas, I used them overnight as a precaution but didn’t really need them. Still have a touch of D now but it’s all controlled.
I bought some microfibre sport towels for use at home because they dry quickly and take up no space in the wash. I wish I had taken them in because the hospital towels were tiny and like drying yourself with a ryvita .
One thing that really helped me post melphalan mouth was tinned pineapple- I’d definitely stick a few small pots in - it was the only thing that tasted like it should. Oh and refusing the met anti sickness, they have many other options which had less side effects. Again remember your agency, if you feel a particular support med isn’t helping talk to the nurses or docs about it - there will be something else. You all have the same common goal, so the more insight you can give them the better.
Everything else I’m sure you’re all over.
By the way my worst time wasn’t the nadir, my worst time was the day after ASCT. That freaked me out, because everyone said you’ll feel fine then and will go downhill from there. Mentally that was a lot, I kept thinking how can I feel worse?! When I was at the lowest and on antibiotics etc I was so shattered all I could do was sleep and that wasn’t as worrying. So just bear in mind that my experience was different to a lot of other peoples so if you don’t fit the standard pattern, don’t worry xxx
Just know I’m thinking of you tons and with you every step of the way xx
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Thank you for that @Spangleystar , I was told when cells collected that they’d be in touch with a consultant appointment in 3 weeks, then I’d get a date, 
it’s only been 2 weeks, if an appointment doesn’t appear by Tuesday I’ll be on the phone to them I do know someone in my group, not on the trial waited 9 weeks and another 12 and she also had to have another cycle of chemo. Currently unaware of paraprotein levels, I’ve literally just been left in the abyss 
no bloods, nothing
I don’t think mentally I can go down the shaving route, so maybe cutting really short would be the answer for me too, and just let it drop out, did it hurt very much doing it that way?
That’s mind blowing that the anti-sickness can make you feel sickly, glad you didn’t have to use lots of tena, I was wondering how many packets to take in ,so I guess 2 will do.
Do you now get a break from medical appointments or do you have to do weekly bloods for the 100 days? Have they given you strict rules to follow xx
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I took one pack of tena in and still came out with some. The hospital may have shopping volunteers - check with them in advance- may save you overpacking and shopping, as they can get you whatever you run out of, they took card payments.
Hair definitely hurt less the shorter it was so I kept it long on top at first. The longer it is the more it moves, the more it moves the more it hurts! So took my scissors to it again in hospital.
I have bloods and a telephone appointment next week. Thankfully they can do the bloods at my local surgery. Then another a couple of weeks after.
I really hope you get a date soon @Byrnebaby xxx
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When I lost all of my hair my wife realised none of my hats would fit so she ordered a boys size. Think it was initially for a 6 or 7 year olds head size 
Might be worth looking at that as an option
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