Hi @Fifimac perhaps it is natural and it is early days and some of your feelings will naturally subside, you and your body have been through a lot.
Perhaps check it out with your medical team as mine is definitely not a medical opinion just my own experiences and I have not had a transplant.
I remember when I was first diagnosed having this urge to pull my leukaemia blood out of me.
After the first 13 week lockdown I found that I lost my confidence in going out, I felt safer at home.
The traffic sounded so loud, it travelled so quickly and the outside smelt of fuel.
That wore off but I have not had the confidence to drive since.
I am so much more aware of my surroundings and sometimes am very wary of people around me and wonder if they have Covid. I avoid crowded places.
I have learnt to say āNoā to putting myself in situations I might not enjoy and would feel stressful.
I resigned from several positions of responsibility that I was feeling were a choreā¦
I walk a lot so spend more time on my own just going where I want to and enjoy.
I am putting my big girl pants on this afternoon and going on my own to see Nigel Havers and Patricia Hodge in Private Lives. I have an aisle seat.
I hope others will share their experiences.
Be ever so kind to yourself
I completely understand, thought I should be my old self once I had recovered from the transplant. Iām 18 months post transplant now and do feel more relaxed about things but I do still find myself leaving crowded places as I feel panicky. I also get random feelings of anxiety which I never had before, I find deep breathing helps. Take it easy x
Heya @Fifimac
Thanks for the check in. Danae is a bit brighter today 
. Bloods are looking good and neutrophils are coming in at 0.8 
She still has some pain/discomfort but this is improving. The consultant said he will consider her able to come home at the beginning of next week 
One of the other young ladies we have met on this journey (with Hodgkin lymphoma) has today had the news she is in remission. 
This afternoon Danae is also going to meet another young lady who she went to college with who has ALL and is at the hospital today for the dreaded transplant talk 
. It really is a rollercoaster 
for everyone huh?
Hope everyone is staying dry, warm and smiley
The (nearly there!) DD xx
Poor old Danae and You @SarahMum the pain/discomfort is really lingering isnāt it.
Spoil yourselves.
You sure are The (nearly there!!) DD xxxxxxxx
Hi @Suey
Yes random feelings of anxiety , that is how I feel.
Think the waiting on the day 100 bone marrow test isnāt helping either ā¦ Iām trying to put it to the back of my mind but itās hard.
Everything is full of ā what ifās ā just now.
Unfortunately Iām not the only one going through this and yes I practice deep breathing which does help.
Thanks for your kind words , best wishes x x
Hi @Erica
How was the play ? I hope you enjoyed it , Nigel Havers is a brilliant actor 
I think waiting on my results from bone marrow test isnāt helping but Iām not alone there I donāt think.
Lots of people will feel the same.
I just donāt like feeling vulnerable I suppose , I like to be the one in control.
Onwards & upwards
Thank you so much for all your kind words and suggestions 
x x x
Hi Sarah
I hope Danae enjoyed meeting up with the girls , although I bet it was a bit scary for the girl getting the transplant talk !
How is Danae feeling today ?
I really hope she gets a reprieve soon and gets home 
sheās seen so much of hospitals , itās just so unfair.
You look after yourself Sarah and keep us updated when you can
We have heavy rain & wind here in. Bonnie Scotland. Iām having a Jammie day.
Much Love to you both 
Fiona x x
Hi @Fifimac
Aw, I know what you mean. I felt exactly that during my recovery- I was worried about covid and colds etc, but also I lost my general confidence. I suppose itās because lifeās tablecloth has been whipped out from beneath our plates and a few glasses have tumbled. (I use an eating metaphor because that was a big feature of my recovery too. 
) Life doesnāt feel as certain and secure as it did. And one can feel so much more vulnerable. And also, weāre out of people practice after so long in treatment and isolation. Iām an introvert so I didnāt mind the isolation, but my people skills did suffer significantly. I couldnāt and still canāt face big get togethers.
When I went back to work, I realised I didnāt have the confidence for big responsibilities anymore either, and took on a lesser role than previously. And I just didnāt want the stress of greater responsibility, because stress affects our immune systems.
But the good thing is we can work on our confidence. Iām not too bothered about regaining my fake extrovert skills though (!) Iāve decided to accept Iām quiet and fairly unsociable, and to not put myself out too much to please others, as I used to. But I do need to keep doing things like working and going to new places and stepping out of my comfort zone, otherwise my life would retract into very little, and I donāt want that. So I keep putting myself out there, and my life confidence has come back.
Hopefully this feeling and phase will pass @Fifimac, as the time and your recovery progresses. Itās a strange old thing, this process. A bit like grief, I suppose, because there are many stages and everyone experiences it differently. And there is some grief mixed in, because weāre very likely a little bit changed, and our lives will never feel quite the same again. But I reckon we come out of it better.
So glad youāre feeling good otherwise. Onwards, eh, @Fifimac? X
Hiya
Yes life has definitely changed and getting used to these different emotions is hard.
I hate people, even close family seeing me as vulnerable, I like to put a brave face on and not admit any weaknesses. SILLY I know !
I know there are lots of people going through the same emotions and that is just awful too.
Iām thankful that Iām getting well looked after by the medical team both here & in Glasgow.
The mind is as complex as this disease we have 
I hope you are feeling better and enjoying having your husband home for a little while.
I saw on another post how you werenāt feeling so great !
Iām truly thankful for this forum and for all your helpful replies ā¦ it sure does help speaking to people that are in the same boat ( so to speak )
Onwards & upwards for sure 
Much Love
Fiona x x
Ooh those neutrophils are sounding good, @SarahMum! Hopefully Danae will find she feels a lot better as they get back to a normal place. Am sorry to hear sheās still experiencing some pain though. And that she hasnāt made it home this week. Things rarely go to plan, do they? I donāt think any of my hospital discharges happened when they should have. Those extra weeks can seem so long and frustrating, canāt they?
Am sorry to hear an old college friend of Danaeās also has an acute leukaemia. But sheās lucky to have Danae to talk to her about the dreaded transplant talk etc. Having some prior awareness of whatās to come really helps brace oneself for the scary bits. I hope they have a good catch up.
What weather, huh? Must be making your drive worse, Sarah. Take it easy on that nasty old road, wonāt you? Sunās just peeping out here now - hope youāve got some too! Xxxx
So true about our minds, @Fifimac. I think half of Acute myeloid leukaemia (AML) treatment and recovery is about getting on top of oneās very unhelpful mind! I managed to do so during treatment and initial recovery, but I have needed to put more work in again recently. Btw, if you ever think you need it, Macmillan do 6 free counselling sessions for anyone who has ever had cancer, via BUPA. Iām looking into taking up that offer.
Yes, the old covid fatigue got the better of me, @Fifimac. I began to feel very down because of it. My GP has been stupendously wonderful though, and did everything possible to investigate and help. And the outcome was she confirmed Iām in excellent health in every way (soooo good to hear, which in itself boosted me) and that it is likely just post-viral fatigue and perhaps a touch of depression as a result of that and everything else that has happened, all catching up with me. So I am trying a low dose of sertraline, counselling, and Iāve taken steps to reduce my chances of repeated covid infections (working from home.)
And Iāve had some other good news which also boosted me: At my last transplant appointment, the consultant said that now Iām beyond 2.5 years post-transplant, I could consider myself cured! Leukaemia rarely comes back after this much time post-transplant, apparently. I had thought Iād have to wait 5 years to hear Iām in the Very Safe Zone, but apparently itās 2.5 years. So that really did lift me up, and I hope thatās encouraging for you to hear too. 2.5 years is not so long. Youāve done a chunk of it already!
So yes - we must be aware of our mental health through all of this. It can be a fragile thing, and Acute myeloid leukaemia (AML) can do a number on that too. As @Erica always so wisely says, āBe kind to yourself.ā
And thank goodness for this forum and our Forum Friends. 
X X
Hello @Fullofbeans. Your analogy of the table cloth being pulled away really resonated with me. It reminded me of this poem which I wrote a while ago. I share it here in the hope others find it helpful. Willow x
THE TABLE
My life was like
A table neatly laid:
Dinner plates and glasses
On a pretty cloth
Trimmed with lace.
All the cutlery
Shining brightly there.
It had taken time
And careful thought,
Patience, love and care.
I was very pleased
With what had been created.
The table brought me joy
And satisfaction
To see it decorated.
Little did I know
What would happen one day
When all at once
Out of the blue,
The cloth was pulled away.
Broken, shattered pieces
Lying on the floor.
Chaos and confusion
My neat ordered table
Was suddenly no more.
Why had this happened
Like a storm passing through?
So much change and loss
Coming to destroy
Everything I knew.
I was shocked and stunned
By all that had been lost.
Surrounded by the debris
All I could do was weep
Amidst the chaos.
Would my precious table
Ever be the same?
Would I find the strength
And courage to restore
It once again?
Could I one day be grateful
For all that had gone?
Yet even in my grief
And sadness
I chose to carry on.
Oh my goodness @Willow, thatās brilliant! Have you posted it on the forum before? I wonder if the image came to me via you? Because I always read any poem of yours that I see. And I have a very absorbent mind. If not, thatās a strange coincidence! But itās true - it does feel like the fabric has been ripped out from beneath us, and weāre left with messy debris.
I hope you have found the strength to restore it again - or at the very least, to rearrange things in an order more suited to todayās meal.
Your poems are fantastic, @Willow. Please keep writing and sharing. X
Oh @Willow so, so true and a very fitting analogy, youāve hit the nail on the head yet again.
I like things that I can see in my mind.
Be kind to yourself, you are a very special person as is everyone on this thread and forum is. xxxx
Thank you @Erica and @Fullofbeans. I havenāt posted this poem before. Must be a case of great minds think alike! Warm wishes, Willow x
Gosh, thatās a bit uncanny, @Willow! It is of course a case of great minds think alike! It is an apt image. Iām slightly relieved itās just our genius, and not me plagiarising you. 
How often do you sit down to write? And have you always done so, or is it something youāve found to express yourself since your diagnosis? It must be a great way to process how you feel, to help come to terms with things. X
Thank you @Fullofbeans for your kind words. Most weeks I write a new poem, sometimes two! It all started when I heard a simple poem recited in a church service in 2016. I had never written poetry before but I wrote my first one the day after that. I have written several hundred now. Yes, it is an excellent way to process my emotions. My therapist kindly lets me read her my poems and we talk about them together. I wish I had discovered my gift sooner, especially after my diagnosis which was many years ago. Warm wishes, Willow x
Itās amazing how one experience can trigger a whole new interest and skill, isnāt it, @Willow? Had you not gone to that church service, perhaps you wouldnāt have discovered your poetic abilities until next year, or even ever at all! And Iām sure theyāve made a lot of difference to your recovery, and to many people here.
Two poems a week is actually a lot! Poems are short, but they must be a great deal of work, having to condense a complete idea or narrative into so few words. Iām impressed! And such a good workout for the brain too.
Well, keep them coming @Willow, and thank you for sharing them. And they might inspire someone else to start writing poetry, in the same way that church poem inspired you. I hope so. X
Love the thread additions and well done @Willow for the poem. We loved it 
. Definitely keep them coming and share if you want toā¦
Well, weem outta here on Monday. The neuts are in at 0.8. Last antibiotic dose tomorrow and Danae is definitely back . I am
so relieved as this has definitely been the worst.
Have a fab weekend everyone and bring on Monday where Miss Danae drops the mic 
and leaves the hospital building
The DD are back in (a Cornish) town as from Monday xx
Oh @SarahMum and Danae just about freedom at last.
The best medicine is special bracing Cornish air.
Wow, everyone the Dynamic Duo are back !!