Acute myeloid leukaemia

Dear @SarahMum
Thank you for sharing this and such wonderful news to hear. Danae (and you) have done so well through the most challenging of circumstances.
I am so happy to hear of Danae’s plans, that must feel amazing for her to be with her friends as she has missed out on so much.
Best wishes to you both
Gemma

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Made my day this, no other way to put it. I’ve let out a breath too! All my best to you both x

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Oh @SarahMum and Danae, whooppee.
Yes, I can only repeat @judesadventures post.
I cannot say that the emotional rollercoaster gets any easier and since my diagnosis tears spring out of nowhere.
Anniversaries are never easy, those flashbacks.
@SarahMum I am really glad that Danae can start to fly the nest, but perhaps it is not going to be easy for either of you, but especially for you @SarahMum and we are here for you.
Love to you both and Danae we want to hear all about your adventures

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This is so wonderful, it fills me with hope for our own journey but also so nice to see good news stories and experiences for Acute myeloid leukaemia (AML). It has meant a lot to us to be able to follow your journey & hope you both do something nice to celebrate this tremendous news.

Lots of love x

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Hi Everyone

Hope all is well with you all out there? Apologies that I haven’t been on for a while - things have been busy in a good way :blush:

How was everyone’s Easter? Hope you all had some time to relax and eat chocolate eggs :yum:

We are good. Danae went up to visit her Uni friends and went to the Spring Ball. She then came home, repacked her suitcase and headed out to Majorca for a week with her cocktail society buddies :tropical_drink:. She had a lovely time and described it as a ‘week of laughing at random things?!’

For those of you that have been with us for the journey you will remember that this is where things started when Danae went to Portugal with the cocktail gang last year. She would call me and say she felt unwell. I would do the ‘Mum’ thing and tell her to take it easy on the cocktails and have an early night. Little did we know what lay ahead. Like all of you - your bravery, determination and positivity as you travel your journey makes me feel very honoured to be part of this special community.

Clinic last Monday. All good with bloods and neutrophils were 3.6! I think that’s the highest they have ever been without injection assistance.

So, tonight we are off to a cowgirl :cowboy_hat_face: hen night. This is a young lady we met in the hospital. Now in remission from Lymphoma. So tonight we will don our sparkly Stetsons and line dance the night away?! :joy:

Take good care all you lovely people out there. We think of you often and send love and positivity to you all.

Will be back with an update soon…

Lots of love
The DD :two_hearts:xx

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Oh @SarahMum( and Danae) you talk about the patients bravery, determination and positivity, I would like to say that you have shown exactly those same attributes and I feel very honoured to have you as part of our very special community.
It might sound weird but I feel that I know you both.
Enjoy sparkling in your Stetsons and line dancing the night away.
Your social lives are definitely more sparkly than mine
I think of you two too our DD, love xxxxxx.

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Hi everyone. Iam going home today after my first cycle of chemotherapy and spending 28 days in isolation. I have bone marrow biopsy on Thursday and consultant appointment on the 2nd May to discuss results, and determine if I need the same chemotherapy drugs for the 2nd cycle. The plan is to then be admitted again on the 6th May and 2nd cycle to start on the 7th. Iam losing my hair which has never worried me but in reality, Iam not sure if I can part with it yet but I also dont want it to look a mess or all fall out in the shower when I get home. Proving harder than I thought to let go of it. Looking forward to fresh air, home comforts, delicious food, my own bed, and quality time with hubby and family.

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Oh @Caroline30 I am glad that you have a plan.
Yes, it must be hard for you losing your hair, but interesting that you did not think you would find it so hard.
Perhaps talk it through with specialist nurse or medical team, they will be used to people with the same dilemma.
Enjoy your time with your home comforts.
Be kind to yourself and please do let us know how you are feeling and getting on

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Hi @Caroline30

Good to hear you are heading home :blush:. Enjoy that time and rest up. It will bring you strength for your next round.

My daughter broke her heart losing her hair as she loved her hair and (as most young ladies do) spent hours looking after it and training her curls. She made the decision to shave it off as it became uncomfortable in her scalp. She also felt it gave her back some control as she made that decision rather than cancer making it for her. It has now started to grow back and is the softest curliest hair ever!

Take your time and be kind to yourself - you have gone through so much. Sun is out so breathe in that Spring air and enjoy family time :two_hearts:

Sarah

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Hi all

How is everyone doing out there?

So, today is Danae’s Cancerversary. A weird day of mixed emotions. She doesn’t want to do anything which I can understand - hardly a date to celebrate huh?

But, I have ordered her flowers :tulip: as a surprise and we have chocolate cake :yum:. She asks about you all often and wants to know updates. So, do take good care of yourselves and keep posting.

Catch up soon

The DD xx

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Hi @SarahMum yes, anniversaries, especially cancerversaries, can bring up very mixed emotions for me too.
I know I become very introverted and distant and my mind goes off in all directions.
I get a lot of ‘survivors guilt’ and think about the friends and people who I have lost, even people who have not had blood cancers. I also see them like a picture gallery.
I also remember my own blood cancer journey.
I also feel so much gratitude for my friends and blood cancer friends and my life today.
I just want to be left alone in my own space.
I find it an exhausting day.
I expect today has brought up a lot of thoughts and emotions for you too @SarahMum
Be very kind to yourselves, especially today.
Sending you both lots of love DD’s xxx

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Hi everyone. I saw my consultant today for results of BM biopsy after first cycle of chemotherapy. No leukemia cells just healthy ones on the rise, back in next week for repeat of cycle one (10 days) and then two consolidation rounds which will be shorter and no transplant needed. Iam so so happy right now, and Iam enjoying every second of being at home. @SarahMum I hope Danae enjoyed her flowers and chocolate cake, and that you could both celebrate how far she has come since her diagnosis, even though that day is one we would all rather forget.

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Hi everyone. Today I have started cycle two of chemotherapy, even though I struggle with the isolation and food, I feel Iam better prepared this time, I understand more of what is happening and most of the medical terms now. I thoroughly enjoyed the two weeks at home, eating great food, breathing fresh air, and being a normal wife, mum and nanna.

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Hi @Caroline30 that switch between being a patient and the isolation and being at home eating great food, breathing fresh air, and being a normal wife, mum and nanna must be so, so hard.
Be very kind to yourself

Hi @Caroline30

Thanks for your update. Danae loved her flowers and treats. Last week we were at the hospital clinic so she could have her bone marrow biopsy. This goes to Guy’s in London for the MRD test so we now await the results…

The whole hospital/isolation thing is tough huh? But, every day is one day closer to end of treatment. Do you have any tips for passing the time? We bought a Nintendo Switch and hooked it up to the room TV. We spent hours playing Mariokart :joy:. Danae always beat me!

We are thinking of you and sending positive energy your way. Take good care and do let us know how you are getting on. The thoughts and wishes of loved ones can help and support you (even if they can’t be with you at all times). It sounds like you have a super lovely family right there :blush:

Sarah

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Hi @SarahMum and Danae, please do let us know how Danae’s MRD test results go?
After 20 yrs I still get anxious before tests, results and appointments,perhaps it really is an emotional rollercoaster for both of you too, I know I get introverted and quiet.
Look after yourselves and @SarahMum who would have thought that you would be supporting others today.
Enjoy the good weather my DD. xxx

Morning all,

I hope everyone has had a better night than us. Unfortunately my dad has relapsed.

Yesterday he was so weak he could barely move, so my partner rang the hospital and then drove him in for a blood test.

At 3am we were woken by the home phone ringing, with dispatch calling to say there was an ambulance waiting outside for dad. We hadn’t heard the doorbell. We’ve come in through A&E and have had the most brilliant doctor looking after him. So kind, explaining things well, doing every test under the sun and really going through all his symptoms.

He’s been given Hydroxycarbamide and now we are waiting in a corridor (which is actually nicer than A&E) for a bed to become free on the haematology ward.

I’m in practical mode and I knew this would happen at some point, but it’s quite a shock to mum.

At 82 dad has been doing remarkably well, especially as he’s been off treatment since August last year. We wait and see what the options are now.

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Oh @Ilona what a shock to have a telephone call in the night like that and I expect you are all in shock and as I would be @Ilona in practical mode.
I expect there will be a lot of waiting around and I also had a brilliant experience with NHS staff yesterday, so caring, we are so lucky to have them.
Please keep us posted and be ever so kind to yourselves.

Hi @Ilona

Sorry to hear the update about your Dad and hope he is being well looked after.

We are so lucky to have the NHS and kindness of those who work in this overloaded system.

Do take care of yourself too in all of this.

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Hi all

As requested @Erica, this morning Danae received a call from her clinical lead nurse - the MRD test results are back from Guy’s and they are negative.

Danae remains in remission :blush:. Again, lots of emotions visit when she receives the news but I am sooooooo happy :smiley:! My beautiful girl remains in remission- here’s to the next 3 months :two_hearts:

I hope everyone else is doing okay out there…? We think of you all often and Danae will ask if there are any updates and to read them out to her. So please, if you can post an update. This forum has remained a constant source of support and a safe place for me.

Take good care lovely people and be kind to yourselves

The DD :blush::two_hearts:xx

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