Hi @SarahMum I am so glad that Danae is more settled.
I am so impressed that you managed to get out on your happy place bike, hopefully it recharged your batteries a bit.
Wow, you are both doing so well.
No sun here yet but I am sure it will arrive.
Enjoy your Eurovision sleepover it goes on to past my bedtime.
I have a friend who lives in Liverpool and he has gone into hibernation till he gets his City back!!!
Look after yourselves.
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Hi @SarahMum
Iâm sure they will support you a lot better than the company that I worked for when I was diagnosed!
Keep the updates coming. We are all right behind you both x
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@SarahMum to your daughter & all your family I beat acute Acute promyelocytic myeloid leukaemia twice, I also had/have primary progressive Multiple Sclerosis.
Heamotology teams are miracle workers
I imagined myself swimming through an ocean with a sunset in the background that I would reach, I did reach it and so will your daughter!
It really does come from âwithinâ though. Your team is fantastic, and will always be there for you in terms of medical knowledge and morale, they can only do so much though, your ULTIMATE recovery comes from within
Keep that chin up girl!
Just stay positive and BELIEVE!
Oh it does work and has done for me 17 years clear.
FIGHT THE FIGHT!!!
Also look up the Rocky IV Sountrack its high octane powerful stuff that puts you in the right frame of mind may I suggest the instrumental tracks âWarâ and âTraining montageâ should be blasted a lot on repeat play as well! âGet On Your Feetâ by Gloria Estefan is also a great motivator, but THE ROCKY IV SOUNDTRACK IS A MUST LISTEN FOR MOTIVATION, POSITIVITY, AND MORALE
Just like ANDRA DAY SAYS RISE UP!
YOU GOT THIS GIRL
NOW WIN
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These guys are great and deserve GOLD MEDALS HOW THEY HELP PEOPLE ON THE PHONE @SarahMum They know who I am, but I keep anon on here.
Thats right @LauranBloodCancerUK @Alice_BloodCancerUK @TanyaBloodCancerUK are just perfection and to state the obvious make sure BloodCancer UK website is like a bible to you!
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I hope you get the time off you need in the way thatâs right for you. I appreciate it wasnât my child, but Iâm NHS amd when my hubby took critically and suddenly ill with a terrible prognosis, i was given a couple days compassionate leave and then a sick line for 6 mths (obviously regular lines rather than one). Stress at home/family was written. It meant our income was more protected (hubby was only paid for 13 weeks of the 18mths he was off). My work were happy to support under the circumstances- i have everything crossed yours will be too. I send every good wish to you and D and all your family x
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Thanks Guys. It has been a busy few days. First round of chemotherapy complete and now we waitâŚ. Danae has had episodes of bleeding (her platelets were so low 5, so she has had platelets top ups) She has also been quite anxious but I think that is just all that has happened to her in such a short space of time. She was positive today and is having beans, bread and butter for tea because that is what she fancied.
My car broke down (again!) but my local garage was really kind and prioritised the work so I got it back after one day which is great (albeit I am now ÂŁ900 lighter)
Am home tonight for a sleep in my own bed and we then see what tomorrow bringsâŚ
Thanks a for all your advice and support 
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Thanks @judesadventures Sounds like a stressful time for you/your husband and family. I am pleased your employer was supportive.
I have spoken to my manager who was great. I have told her I am taking this week as sick due to stress/anxiety so will complete a self certification and then request a fit note from my GP. Will keep you posted.
Thanks again and take good care
Sarah xx
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@SarahMum I expect you are both experiencing anxiety, it is natural, and there is a fascinating thread and link to a brilliant Blood Cancer UK Facebook session on anxiety which is worth a watch. Coping with Anxiety - General chat - Blood Cancer UK Forum
It is such scary times for you both.
I always think the colour of blood is so vivid and so, so scary.
Yes, I went numb and froze with the shock of my diagnosis and then my fear and anxiety kicked in at a later date.
As for your car and the cost to have it repaired, that would feel like the final straw to me.
Be kind to yourself and make the most of being in your own bed. xxxxx
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Hello Sarah, wanted to also offer my support to you and your daughter, I was diagnosed with Acute Myeloid Leukaemia and went through treatment in 2015. I also work as a patient advocate with BCUK as well as other organisations and research units so if you have any questions I may be able to help. Hope you and your daughter are getting the support you need, sometimes you have to go out and find it! Where is your daughter being treated? I was 39 when diagnosed but my Mum was by my side most of the time and weâve spoken a lot about it all since from her view too⌠itâs a tough experience but you are not alone xx
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Hello @SarahMum
Just thought I would check in to see how Danae is doing this weekend? With the chemotherapy finished now it will continue to be the management of the blood counts and any infections that may occur whilst her neutrophils are low.
Anxiety is totally understandable as this experience is such a shock to both the body and the mind. Talking through this can help along with other breathing and mindfulness techniques. Do ask her Clinical Nurse Specialist and Young lives v Cancer social worker she needs support with this through either talking therapies or complementary therapies.
Sending you both the very best wishes and do remember we are also on the phone if you should need to talk.
Gemma
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Good morning @GemmaBloodCancerUK
Thanks so much for the check in. Danae is doing okay but does have an infection. The team here are fab and she is now on 2 different antibiotics. She is sleeping lots too.
Today is consultant ward round day so I stayed at hospital last night so we can get update together. We are in that âpauseâ space and we may see cell re-growth at the end of this weekâŚ
Thanks also for advice on mental health and well-being support. I am going to ask about this today as it has been such a whirlwind for her. Will keep you posted and have a good start to your week
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Hi @AnnaMam
Thank you so much for your supportive message. It is tough huh? Danae is being treated at Derriford Hospital in Plymouth. The team here are truly amazing for which we are both grateful.
I still feel scared and overwhelmed at times and know that Danae does too. That said, we stay positive and laugh every day at the silliest things 
. I am so proud of my girl and how she is dealing with this.
I have found the support via this forum invaluable. Thanks to you and all active forum members.
Will keep you posted
Sarah xx
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Hi @SarahMum I reckon sleeping is the most restorative medicine of all.
It is weird because I always ask myself why do I sleep so much in hospital when I am not doing anything, but my body is working away inside, especially with the medication, and there are the emotional feelings, thoughts and practicalities whizzing around inside too.
Perhaps the emotional feelings, thoughts and practicalities are whizzing around inside you too plus keeping the plates spinning at home, your journeyâs and work, finances will mean you get so tired too.
Also laughter is the best medicine.
I expect your girl is incredibly proud of you too, you are both part of our forum family xxxx, .
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Hi @SarahMum
Glad to hear the chemoâs over for now and the infection is being tackled. Donât worry too much if cell counts (esp neutrophils) take a while to rise - that seems quite common, especially after infections. Great that Danae is sleeping a lot - the time and worry passes faster if oneâs able to do that.
I was at Derriford for the second half of my treatment - I had a stem cell transplant after chemo (my local hospital in Cornwall doesnât do them.) So if you need to know anything about transplants or anything else there, please just ask.
Theyâre a fantastic team at Derriford. Danae is in brilliant hands. I overheard the lead transplant consultant laughing to a patient that the waiting room was so busy because theyâre too good at curing people. 
And theyâll go out of their way to help you with whatever they can during and after treatment. I actually look forward to seeing them all on my 6 monthly appts now. Theyâre wonderful.
I hope you both have a good day today, and that the ward round is positive and encouraging. X
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Hi @SarahMum, I hope youâre doing okay. How did you get on speaking with the consultant today? Thinking of you and Danae. I hope she (and you!) are getting some rest, and that the antibiotics start doing their job soon.
Best wishes,
Tanya.
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Yes itâs certainly tough and I suppose knowing that and being ok with that helps, it wasnât until well into my recovery that I learned to accept things as they were rather than always trying to fight against them⌠âIt shouldnât be this toughâ âI must be the only one whoâs finding it so hardâ âwhy am I not coping with thisâ and so on. Remember that even though its all new and very strange, suddenly being thrown into this world that you know nothing about and a very steep learning curve with all the interventions, side effects and curve balls but you and Danae are not alone⌠many of us have also been in your position so truly âget itâ.
My Mum was definitely scared at times⌠once she rang the hospital because she was so worried and my team told her âThis is all part of Acute Myeloid Leukaemia and its treatment, it may seem bad to you but anything that happens to your daughter we will deal with and we have seen beforeâ she found this reassuring.
We also laughed and still laugh now at some of the crazy things that happened, I find it amazing that as humans we can still laugh in the darkest of timesâŚ
Please pass on my best to your daughter and Iâd be happy if she wanted to reach out to me
Also feel free to ask anything, no matter how strange or silly it may be
Have you both been introduced to her CNS?
Keep going x
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Morning
Thanks @TanyaBloodCancerUK and @AnnaMam for your support. @AnnaMam - sorry - what does CNS stand for? We have met so many people, I canât remember half their names?!
Danae is doing okay. She is now at day 26 but bloods not yet showing anything? She is still being pumped with antibiotics and will have another ultrasound on her heart this week to check the âblobâ that they found.
I also feel they are setting us up for the distinct possibility that they will need to go down the stem cell transplant route. This scares me so any advice appreciated. They asked Danae to contact her older half Sister (who lives in Europe) She cited anaemia as an issue and has refused to do it. This has shocked and saddened me but we will move on. It is not a certain at the moment. We will also find out this week if they will take a bone marrow sample (despite nothing yet showing in bloods) so should also have some news on what next chemotherapy round will look like.
It is good to see Danae with more appetite and I cook and take her fav meals to her. She has also shaved her head as hair was falling in big clumps (upsetting to her and me) I found this really upsetting but she is rocking the buzz cut.
Not going to lie - I am exhausted 
. I feel really drained and am moving around on auto pilot. I sometimes wonder how I am going to do six months or more of this. I know I will because itâs my girl and she is going through the most scary time of her life.
Sorry to offload on here. I am feeling really teary and emotional about everything
Sarah
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Hi @SarahMum great to hear from you, I am always thinking of you.
First, before I forget a CNS is a Clinical Nurse Specialist. but they are known by so many names, but it is basically a contact point between Danae/you and her medical team. The medical world and jargon honestly often goes over my head.
A lot of people do have different types of stem cell transplants, there are a lot of peoples experiences on here and on the Blood Cancer UK website there is a lot of information.
She is currently in the best place where all different types of tests can be done.
It must have been very emotional to see Danae with her shaved head, I think it is as it is so visual, part of us, but for some people it can be a âbuzz cutâ and easier in hospital to deal with, it must be horrible and upsetting to have your hair coming out in clumps.
As for you I cannot comprehend how you are keeping going, I am not surprised that you use the word âautopilotâ. I also get so teary and emotional when I am actually over tiredâŚ
Perhaps for both of your sakes a little conversation with Danae is in order.
Perhaps if you donât you might get to a stage your body says âenough is enoughâ and in my case I really I cannot go on and I get medical problems.
Who am I to talk about balance in my life, but perhaps a little more balance now might just give you the strength to be there for Danae in the longer run.
Donât forget the emotional, physical and practical impact on you and your life, in a weird way it can be harder for the family member than the patient.
You can also read Danae my post.
Please, please look after yourself as well as you are looking after Danae.
Loads and loads of love to you both and be so, so kind to yourself, Danae is so lucky to have you, some people do not have that luxury. xxxxxxxxxxx
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Hello
CNS is the Clinical Nurse Specialist ie Macmillan Nurse who has been assigned to Danae ? These nurses are highly qualified and a great source of information and support.
The stem cell thing may or may not mean they think she will need one as they usually put things in place in case, they did for me even though so far I havenât had one. The tested both my siblings early on to see if they were a match and this is all part of the ânormalâ procedures with Acute Myeloid Leukaemia. Usually thereâs only a 20% chance of a sibling being a match.
Perhaps her sibling doesnât realise the implications/importance of being a donor and often there are myths around the donation process which may be behind her reason? Often if you can find out it may change⌠how would they feel if they knew that this would be life saving for Danae, itâs not something that is done unless its vital, think most people would find it hard to not be a donor with this knowledge? Also donors get a lot of support and I believe with travel and accommodation too. Iâm pretty sure with Aneamia they would be able to treat that in order the prepare her for donation. Sorry this is the response youâve had.
Itâs usual to have several bone marrow biopsyâs throughout treatment, I had several, even though it doesnât show in bloods it can still be at low levels in the bone marrow so its good that they monitor it at this level.
I remember the hair moment too, once I made that jump I quickly got used to it, I used to wear hats if I ever went out which was extremely rare, or if people came around which again was extremely rare. It was upsetting to lose my long hair at first and there are emotions that go with it so its ok to be upset, its not just hair, its your identity and a lot more!
It does seem like a long road and I remember feeling absolutly done and the thought of another week just made me cry, however, once I started to just think of one day, getting through the next day and blocking out any thoughts of how long lay ahead it really helped. We all just functioned on autopilot the whole time, doing whatever we could to get through, it does strangely become the ânormâ after a bit & you settle into an odd routine xxx
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Hi @SarahMum
Please donât let the idea of a stem cell transplant scare you - it is just a bag of cells, preceded by more of the chemo. And itâs the Gold Standard treatment for some leukaemias, to ensure the chances of it returning are much reduced. I cried when I was told it was best I have one, but my consultant pointed out I was actually quite lucky to be put forward for one.
Iâm so sorry Danaeâs half sister wasnât able to help. That really must hurt.
I had my Stem cell transplant at Derriford, and honestly - they are a FANTASTIC team there. Danae couldnât be in better hands. Theyâll do whatever it takes, and go out of their way to help you. If you need any info about transplants there, please just ask here, or privately message me.
And please ensure you look after yourself. Take a day or two off if you need to. I couldnât have visitors during my treatment because of the pandemic, and I was actually grateful for that much of the time, because just the thought was exhausting. I just wanted to sleep. So donât feel guilty if you need to regather your energy at home occasionally. You canât support Danae if youâre on the verge of collapse youself.
It sounds like youâre being the ultimate wonderful mum though. I wish Iâd had a brilliant mum like you around whilst I was in treatment.
Take care. X
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