So pleased for you @SarahMum and Danae. Hugs to you both, Willow xx
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Woop 
woop
I hope the weekend flies past and you & Danae are definitely â out of the building â
Much love x x x
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HOORAY! @SarahMum. Fantastic news! Have a great weekend the both of you, with much to look forward to. Am so pleased to hear this. 
Well done, Danae! Xxx
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Hi @Ledgell
How are you getting on ?
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Oooh hello there! Thanks for checking in with me 
Iâm doing OK, mostly. Day +38 and so far so good. My consultant tells me Iâm doing really well and âsailing throughâ, so I simple canât imagine how much worse it must be for those who arenât sailing! I still feel like poop, totally wiped out, gut is very confused, palate even more confused and progress is such baby steps. Some days are much better than others so I try not to feel too discouraged. But I must confess, that overwhelmed feeling does rather overtake me some days. Today is an overwhelmed kinda dayâŚ
Now waiting for the results of my first chimerism test (which was done on day 26). I get up, keep taking the drugs and try to do what I canâŚwhen I can. Sometimes feels a lot like Groundhog Day. But I keep telling myself how lucky/blessed I am to have even been given this chance to be an Acute myeloid leukaemia (AML) âovercomerâ. And that one day, I just might be free of this thing.
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Weem home! 
Got home early afternoon via ASDA to buy an Extra Special Chocolate Yule Log because thatâs what Danae wanted as a home coming treat 
Neutrophils are at 1.1 so coming in nicely. We are back up on day unit on Wednesday where they are talking about taking out her pic line. Not going to lie - it all feels a little surreal (and scary) but for now I am just so pleased to have her home - in her new fluffy pyjamas and wrapped up in a teddy bear blanket
Hope everyone is doing okay ? Sounds like you are getting there day by day @Ledgell 
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Brilliant news @SarahMum and Danae. Never did being home feel so good.
I trust The Extra Special Chocolate Yule log has now been demolished and you are both sitting there with chocolate round your mouths, and certainly not on Danaeâs teddy bear blanket or even your new fluffy pyjamas.
I think a great big rest is in order for tomorrow, Iâve got Pilates and perhaps a hot chocolate might be in order.
Oh, those fluffy pyjamas and and teddy bear blanket sound so cuddly and that is from me who has pink Mickey Mouse pyjamas and a multi coloured Honey Monster onesie ( my Strictly outfit) xxxxxxxxx
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Hi @Ledgell I am not surprised that you are feeling overwhelmed today, I think you are fully entitled to to have such a day.
You and your body have been through so much emotionally, psychologically, physically and practically, give yourself time and be ever so kind to yourself
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Fantastic news 
Danae will be snuggled up in her own comfy bed tonight ⌠one of the best things about coming home.
Enjoy every minute, no early morning or middle of the night wake up calls, checking temperatures & BP.
Bliss 
So happy for you both
Much love x x
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Hey
Nice to hear that youâre doing so well 
It is still early days and youâre so right , it can be very overwhelming !
Although itâs the best feeling, being at home, I think you kinda miss the comfort blanket a wee bit of the ward staff.
However once things settle and you can eat if and when you want to, and actually choose something that you truly fancy eating aswell , itâs so much easier.
You feel like youâre just taking baby steps but very soon you realise !! Wow !! I feel not too bad today, not as tired or not as nauseous ⌠you donât realise that things really are improving.
Iâm waiting on my Day 100 bone marrow resultsđ and 2nd chimerism !
Onwards & upwards take care x x
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Welcome home, Danae and @SarahMum! What brilliant news! That 1.1 in neutrophils did the trick! Hope you enjoyed the chocolate Yule log. My first food at home wasâŚchips! I think weâre allowed
Enjoy being at home together, and if you have the PIC line out, thatâs very liberating mentally and physically. Fingers crossed itâs tomorrow.
What a happy time! 
xxxxx
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Hi @Ledgell
Sorry to hear youâre feeling as you do - that sounds so familiar. But itâs amazing how quickly you improve once, as @Fifimac says, your appetite gets going again, and youâre able to get outside for some fresh air and a bit of walking. Itâs usually a slow but steady kind of trajectory. And the good news is, youâre actually doing well!
It is so overwhelming at times though, isnât it? Being diagnosed; rushed into chemo; told youâre having a transplant; having the transplant and all the glorious side effects - itâs a huge amount to process, and personally, Iâm still processing it 2.5 years later! Itâs impossible to get your head round it all as youâre rushed through the process and suddenly immersed into a life of drips and diarrhoea and blood pressure checks and needles and chest x rays and hospital food and so many people trudging through your bedroom each day. Impossible. I imagine quite a few people are traumatised by it all. I think I was. If you need it, Macmillan do 6 free counselling sessions for anyone whoâs ever had cancer, via Bupa. But itâs pretty good just having a chat here with people whoâve been through it too.
Sincerely hope you have a better day tomorrow. There IS eventual light at the end of the tunnel. X
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Good luck with the bone marrow and chimerism results, @Fifimac. And hope youâre feeling ok and continue to get out a little bit? Thatâs if weather permitting with the storms. And glad to hear your appetite continues to improve. X
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Thanks everyone for ALL your words of encouragement. It really helps to hear that there is some light at the end of this (very long and sometimes dark) tunnel.
Xxx
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Hi @Fullofbeans
Thanks for saying that youâre still struggling mentally, you are a year ahead of me and I thought I was âoverâ it, but have been a bit down this last few days. Iâm pleased to hear that 2.5 years is enough time to be told you are cured, one of my problems has been not understanding why, if everything is looking good, I still need to be checked every 12 weeks! Guess I must carry on being patient! x
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Ah Iâm sorry to hear you havenât had the best few days, @Suey. Itâs a funny old business, isnât it, the mental recovery journey? It doesnât seem to be a straight trajectory, but has its ups an downs. I suppose as much as weâd like to compartmentalise and put it behind us, itâs a life-changing ordeal, and has an impact on many areas of our lives, like overall fitness, earning ability, work choices, relationships, socialising with covid in mind, holidays, our feelings of vulnerability etc etc. Itâs a very difficult period to forget about for all these reasons - and also because of the seemingly endless hospital appts!
Well, yes the good news is that at 2.5 years post-transplant we can all relax somewhat. And Iâm not going to see my transplant team for a year now, which saves me a massive journey and all that anxiety on the day. My care is shared between 2 hospitals, so Iâm hoping my local hospital will now say they only need to speak to me at 6 monthly intervals, and mostly by phone. Iâd been having a blood test every 3 months too. So these appts do start to drop off, so take heart - it will happen.
Howâs life in other ways, @Suey? Are you ferling physically back to normal? Able to live in a more normal way? I really hope so. Youâre getting there. X X
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Hi @Suey
Hope youâre feeling a bit brighter. Iâve to have a bone marrow every 3 months going forward for the next 2-3 yrs as I have the NPM1 mutation and the Consultant has said because I have this marker then itâs a good way to keep a check on everything. If anything was to show up then they can deal with it asap 
I must admit Iâm anxious about this but on the other hand Iâve got to think of it as â active monitoring â
Iâve only to get my bloods checked weekly now at my local hospital as opposed to twice weekly and some of my meds are now being reduced.
I know I should be grateful but it doesnât stop those blooming butterflies from gathering in my tummy. Iâm waiting on day 100 bone marrow resultsđ
I think we all have the same thoughts & feelings at some point unfortunately.
Take care x x
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Hi Sarah & Danae
How are things going at home ?
I hope youâre both getting used to some freedom again 
the weather up here in my part of Scotland is rather wet so not many outdoor walks.
Look after yourselves, much love
Fiona x x
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Heya @Fifimac
All is good thanks. The weather isnât brilliant here in Cornwall but we have managed to get a few short trips in out and about.
I do have some understanding of the feelings of being overwhelmed/anxiety @Suey. I think Danae is doing just fine and then yesterday she broke down in tears because she couldnât find a hat. She said she felt overwhelmed by all her stuff (all her Uni gear is here at home too). Anyway, we have vowed to have a good ol sort out and put things where she knows they are. It made me realise that it is so important to also work on and take care of mental health and well-being too.
Being part of this forum and sharing our feelings is a very positive part of all that so thanks to all who contribute and are honest with how we feel. Thanks also to everyone who takes time to respond and offer support.
We truly do have a wonderful little Blood Cancer family here huh . So, here we are at Friday - anyone have any plans for the weekend�
S&D - the DD xx
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Thanks @Fullofbeans. I have been told that I will be discharged from the transplant team at 2 years (April 24) back to the local Haemotology team, so only 2 more appointments with Glasgow (luckily they have been video appointments as they are 2 hours from me).
Iâm feeling good physically, back to walking up to 5 miles (not every day!!) and we actually have a tidy garden (my husband looked after me well but doesnât know a weed from a flower!)
I have a family celebration to look forward to, at the beginning of December my dad will be 90! His older
sister will be there too, she is 95!
Hope you have a lovely weekend x
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