Hi there lovely people 
We are in Italy 
! 
. We are staying at a beautiful hotel in Sorrento. It is super hot so taking things steady. Tomorrow we head out on a tour to Pompeii and Naples.
Danae is loving it so far. We have a pool at our hotel. These are also helping in keeping cool. Aperol and Limoncello Spritz! 
.
Hope everyone is doing ok m
xx
Oh, it sound absolute heaven, enjoy every minute my DD @SarahMum and Danae
Hiya Honeys - we are home! 
Italy was beautiful! So special and we loved every minute. Danae stated that it was her best holiday EVER!
We went out on tours to Pompeii, Amalfi and Capri. They were brilliant and we have both fallen in love with the Amalfi coast
I had a major anxiety attack before we went. I felt super scared and responsible for Danae having the best time and not being unwell. A good friend offered some great advice to just relax and let everything happen. I was on holiday with my daughter who also is my best friend. I tried to do this and we have truly made some super special memories
We also ate our own body weight in cheese, pasta, pizza and ice cream! 
Hope everyone else is doing okay out there…?
Sending love and positive vibes to you all
The DD xx
So happy you both had a great time! I can imagine the anxiety is a natural reaction but look at you, you did it!
What trip is next on the horizon for you both? Lots of good vibes and healthy wishes for autumn for you both 
Oh @SarahMum and Danae your holiday sounds amazing all the places you saw and what a photo.
I think it is very natural for you to have an anxiety attack, this is a personal, not medical, response, but I keep going and keep going during a crisis and then when I can relax more my thoughts and emotions come out all over the place.
Your Italian diet sounds good to me.
Your good friend gave you great advice to relax and let everything happen, how freeing, I always feel this sense of it’s my responsibility to make it perfect. Thank you you have given me something to think about.
You are both dynamic as a duo, as best friends and separately.
Sending positive vibes back to you both xx
Awww thanks @Toadmum 
Glad all is going well with your husband and the house move has gone okay. Enjoy your time off and take some time to relax 
Danae will be heading back to Uni next weekend. Wow?! I feel so strange about that. The one thing that kept her going through all of her treatment and here we are…. I am soooooo thankful that she is able to return for her final year. But, I am going to miss her sooooooooooo much 
. I will need to book in lots of visits to spend precious time together
You guys enjoy your chill time together as a family and keep us updated
Sarah and Danae xx
Thanks @Erica
I will read your response back to Danae. She always asks now if we ‘have heard from Erica’. You are such an amazing person - taking care of everyone in this space. We hope you are good and taking care of yourself too.
Catch up soon xx
What an amazing trip! A lot of my family are from Naples and I keep meaning to go visit them and then head down the coast. You might have just inspired me to finally do it. I’m so glad the two of you got to go away and have a lovely time. Life is for enjoying when you can.
Go for it @Ilona
You would have the best time . It is a beautiful area. We also drove around Naples - a historic city with beautiful buildings. The chance to catch up with family also
Hi @SarahMum and Danae, I was thinking about your lovely posts on my walk today and thinking about my experiences since diagnosis.
I was going through life on autopilot thinking I had my life mapped out in front of me, perhaps a bit materialistic, bringing up my son, working too hard, but justifying it with my son that we needed the money (which to be fair we did), taking him here, there and everywhere, running a house and sleeping.
When I was diagnosed, and had come to terms with my diagnosis, I decided to re assess my life. The best thing I ever did and I shall always be grateful to my diagnosis for.
I had worked in a town with great history for 20 yrs, but even though I am extremely nosey, I never took the time to look around me.
My reflections were that the important things in life for me are mostly free like music, nature, architecture, but mostly my family and friends and doing things that I enjoy alone or with them.
Everyday I feel gratitude for my life and ‘stop and smell the roses’ my DD.
Sorry I have rambled.
Danae enjoy Uni and @SarahMum we will be here for you as you will miss her so, so much, you have had so much precious time together.
@SarahMum xxx and Danae xxx
Awww Dear @Erica
Not rambling at all. A very reflective and honest post. Thanks for sharing
Well, guess who is back at Uni? (Well back at her halls getting ready for her final year.). My emotions are all over the place. I am so pleased for her - she is back to the life she deserves . But, I am also sad and worried. I guess understandable. I am also tired 
as we drove her up and we came back in this weekend. I will shed some tears and have an early night me thinks.
I see a stronger young lady who is calmer and ready. We will re-start our tradition of sending a picture of our tea every night 
Food is still VERY important in our family!
How is everyone else doing? We send you all love and positive thoughts
The DD xx
Oh @SarahMum, I would be very, very surprised if you felt any different.
I expect you will be absolutely exhausted with conflicting osculating emotions for a while, as probably Danae’s will be.
I think sadness and worry are par for the course as a mum.
My tiredness can be brought on by what personally stresses me, by emotional, psychological, physical, medical and practical issues.
I would have thought you have been keeping so many plates spinning for so long.
I reckon you are right Danae is a far stronger young lady who is calmer and ready, what a gift.
I hope the tea piccies have been swapped and the many tears have flowed and you are now snuggled up in bed .
Rest @SarahMum xxxxxx
Hi All
How is everyone doing out there. I hope life is being kind.
All is well here. Danae has settled into Uni life and is cracking on with her dissertation proposal. She is looking to write her dissertation on the use of metaphors used when diagnosing and discussing cancer. I feel she will have a lot to bring to this topic!
I continue to miss her like mad but I am going up at the end of the month. She has her bone marrow biopsy so I want to be with her for that. We also have a bit of a moment coming up…. Next month will see Danae take her last Midostaurin (Rydapt) tablet. She is looking forward to finishing. If I am honest I have mixed emotions about this. I feel this medication has kept her safe and I am scared of what might happen when she stops taking it. @GemmaBloodCancerUK - is there any research/data/advice (anything?!) you might have around this please?
I am aware that every medical case is individual and I need to stay positive . I feel better for voicing my fear in this safe and supportive space.
Anyway, still think of you all often and look forward to any updates.
Sending love and positive thoughts
The DD xx
Hi @SarahMum personally I would be very surprised if your fears, thoughts and emotions suddenly disappeared just because Danae has gone to Uni.
My thoughts are that suddenly you will have an enormous void not having Danae living with you, the two of you have had this enormous bond in adversity.
I reckon you can both be dynamic whether you are together or separate.
Danae’s dissertation proposal sounds brilliant to me.
Thanks for being so honest, I think it shows enormous strength.
Sending you both loads of love and positive thoughts too, you are both D xxxx
Hello @SarahMum
It is so lovely to hear about Danae’s Uni life and that she is doing so well. I would be so interested to hear about her dissertation when it is written, language is so important and fascinating too.
It is no wonder you miss Danae, you two are a great team and so glad you are getting to see her soon and are there to support her through her Bone Marrow biopsy. It is totally understandable that you feel anxious around the end of treatment. It has been a long time where you have both had the security of treatment to lean upon. We do have some information here for patients finishing treatment but it can be applied to loved ones too: After blood cancer treatment ends | Blood Cancer UK
I think the main things are to talk to each other about your fears, escalate any concerns to the treatment team and keep doing what you are both doing by living your lives well and happily.
You mentioned data and research, have you asked the team looking after Danae for any information about outcomes in general for those on Midostaurin maintenance? This may be something you could talk to Danae about?
Will she be continuing on with her Bone Marrow Biopsies for a period of time? As this can often provide some reassurance of continued remission.
I would be very happy to talk to you about this if you need?
Best wishes to you both,
Gemma
Thanks @GemmaBloodCancerUK . You give great advice. Danae and I have discussed this together and we both have the same fears around the end of Mido support. I have told her my fears and she recognises them but says, ‘what will be will be.’ There is something in that response that hurts my heart but I understand and will be there for whatever ‘will be’
I will speak to Danae and maybe we look into asking about data around outcomes following the end of preventative therapy.
If I am truly honest, I don’t think she will want to know. I get that but as her Mum I think I would (???). I am going to stop there and sleep on things. I am struggling (between being thankful against being sooooo scared about the future.)
Thank you again for your advice, Gemma.
Sarah
Oh and yes, biopsies will continue for another year (2 years in total) with 3 x monthly bloods
Hi @SarahMum my personal, not medical response, is from reading this forum and my own experiences is that everyone is a wonderful, unique individual with their own medical history and nobody can predict the future.
When I was diagnosed I was given a 5-10 year prognosis and I am still here 20 yrs later and treatments have advanced so much in that time.
Just really look after yourself and be so, so, so, kind to yourself, you have got so many friends on here to support you while you are struggling with conflicting emotions and the 'what if’s etc
However a medical professional might put your mind at rest
Sleep tight, that’s my plan too.
@SarahMum you have both done so very well, and it is such a tiring road. I think it is a tough path to walk when we are the carers and not the patients. Sometimes I ask my husbands consultants questions and I recognise afterwards that perhaps it may have been a question that my husband didn’t want to know the answer to.
I am hopeful for you both that the next few months post midostaurin will be very smooth. If it helps you, my husband was given only one cycle of midostaurin in Oct 2023 and his FLT3 mutation never came back, so he didn’t get given any more. It seems to be a very effective treatment drug.
Additionally, your daughter has done so well without a transplant, hopefully that option is never needed but my husband had a half match transplant in the end and he’s doing good so far.
We’ve also been advised of other drug options for FLT-3 including sorafenib as well as new trials including things like CAR-T for Acute myeloid leukaemia (AML) which I try to remember when I am feeling a bit overwhelmed with the what ifs.
Hope the above hasn’t overwhelmed you, but I just wanted to say that your daughter is young, strong and positive and that is the main thing you need to hold onto.
Hi @Toadmum and @SarahMum you carers are the unsung heroes that keep everything running smoothly and who thinks about how the carers are apart from on our forum.
Personally I also think that I have a delayed action that means that I keep going and keep going during a crisis and after things calm down a bit all the exhaustion, emotions and thoughts come flooding out, I know I do.
Another plug for being kind to yourselves and spoiling yourselves.
