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Hi Sandy, welcome to the forum, I think it is exciting how it is evolving and the interesting, informative posts.
Yes, I am also on watch and wait with CLL and people do not realise that because you have not had any form of treatment you still have the symptoms you were diagnosed with. I have written about my fatigue and how I manage it daily.
Take care

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Hi

Thank you for your reply. I think the watch and wait section will be most useful for me at this moment in time so I will give it a try. I think sometimes I just need to offload worries but I don’t want to burden my family with them. I know they don’t mind but it will be useful to have conversations with people going through the same things as me.

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Hello @Yvonne,

Thank you so much for sharing your experience with your diagnosis with MGUS and I am pleased to hear that you have the support of your myeloma nurses, husband, sons, and even your daughters-in-law. Even though you are taking a much needed holiday to Crete, I cannot imagine how nerve-racking the situation has been for you. You may find this helpful, but in the ‘living with and after blood cancer’ section on the forum, there are conversations of support, tips, and advice tackling day to day life if you would like to browse through it. Feel free to start a conversation on the forum if you need to offload!

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Hi @Yvonne, great to hear from you. I certainly relate to feeling nervous around blood test time and medical appointments, I also get a yukky feeling in my stomach and I was diagnosed with CLL in 2003. I also enjoy reading any type of book, but I am into murders at the moment and I can lost in a book and time flies by. Your holiday in Crete sounds great, I have not been there. There are still so many places in this country I want to visit.

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Hi Erica

Nice to meet you. I am an avid reader. I tend to favour books from late 1800’s to 1945 era. I am in the “watch and wait” category for Smouldering Myeloma. I am due my next blood tests end of August. I am on holiday then till 15th September and back at hospital on 19th September for my results. Hopefully my results will be stable. I am okay with things most of the time but I have had some days where I have felt overwhelmed by what is happening. I can’t do anything about it so just have to hope I stay in the watch and wait situation as long as possible.

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Hi @Dawnieb welcome to the Bloodwise forum, I am sure you will find lots of support here,
Warm regards
Anna

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Hello @Sandy, welcome to the Bloodwise forum, this is a welcoming and safe place where you can ask whatever or discuss whatever is on your mind. Kindest regards to you too.
Anna

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Hello :wave:
My name is Leanne

I was diagnosed with CML. Chronic myeloid Leukaemia this year , 13th April 2018! So 4 months…

I am on imatinib , one a day, every day , same time !

On ya 21st August I get my first ever results of my Leukaemia!! They got sent off in July ! I am obviously hoping for “remission” as that is my new goal , but may take time yet !
I’m nervous , as it’s been a wait and a worry where it’s at ! But had to wait till 3 months on treatment !
I recently had an unexpected hospital stay, as I was an hour away from Neutrophenic Sepsis , I had parainfluenza!
I didn’t realise with chemo tablets and low immune system, this can be a commmon thing so it was scary !

I’ve made a blog and I’m emotionally getting better !

So that’s me :slight_smile: and this is my first post :grin::reminder_ribbon::crossed_fingers:

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@LeanneCMLx

Thank you for sharing your experiences following your CML diagnosis. It sounds as though you’ve had a really difficult time recently particularly given your unexpected hospital stay, but I’m so pleased to hear you feel you’re getting better emotionally. I wonder if you’d like to reach out to others in the community and join in the conversation here: living with and after blood cancer. Sometimes speaking to others who are going through or have gone through similar experiences can be very helpful for people, so I hope you find this forum a place you can find this kind of support. If you ever want to talk to us in more detail about any worries or concerns you might have, then do give us a call on 0808 2080 888 (Mon to Fri 10am-4pm) or our support email support@bloodwise.org.uk

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Hi Leanne, Yes, that first blog/post is a big step and reaching out scary. Josh has replied to you giving great advice about the help and support Bloodwise can give you and pointed you in the direction of posts you might relate to on this site. I have CLL and I am lucky enough to be on watch and wait but I find it is the thoughts and feelings like shock, anxiety and fear that I share with others. You and your body have gone through so much in such a short space of time I cannot imagine how you are feeling physically and emotionally, you must be exhausted. After diagnosis my emotions where heightened for a very long time and if you have told others it is a great shock for them as well. I found you find out who your true friends are and who can be there for you practically and emotionally. I think you are doing brilliantly and what I would say is be kind to yourself and take care,

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That’s brilliant , I will check it out :slight_smile:
Thank you :blush:

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@Erica such a lovely comment , thank you very much !

Yeah it’s been hard few months and haven’t known what you expect , but I’m slowly getting used to it and what can happen !

I hope all works out for you and I hope the best for you!

Thanks again x

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Thank you for welcoming me. I am here because I lost my beautiful mum 36 years ago to AML which developed from first having myelofibrosis. 28 years ago I was myself diagnosed with MF, albeit a different kind. Medical sources can’t seem able to make up their mind if MF is a cancer or not - I am on constant low-dose chemotherapy, but I prefer to think of it as a myeloproliferative disorder rather than a cancer.

I want to reassure anyone else with MF that I am still here after all this time! But… am currently having some problems, which is very likely to do with taking Anagrelide.

This is just a brief intro and I’d be pleased to share more as well as learning from others.

Thanks again and warmest wishes to you all.

Marilyn

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Hi @Marilyn, it is great that you have taken the step to join this on line community and thank you for letting us know a bit about you and how you are. I find this group is very supportive and that we do not all share the same disorder but it is the thoughts and feelings I have found we have in common. However if you would like the speak to someone on the Freephone Bloodwise support line, they are available Mon-Fri 10am-4pm on 0808 2080 888. Take lots of care.

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Hi everyone,
My name is Deb, I’m from the Cotswolds and I was diagnosed with B-Cell ALL at Christmas 2016 at the grand old age of 49. Following the UKALL14 protocol I received a Stem Cell transplant from an unrelated donor last summer. It’s been a bit of a rollercoaster journey but I’ve just celebrated my first rebirth day. I’m now back at work, feeling very well, enjoying life and adapting to my new ‘normal’

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Hi @Debbidoodah! Welcome to the forum, I hope you find it a friendly and enjoyable place to be. Sounds like you’ve been through an awful lot in a short space of time, happy re-birth day to you! Take a look around the forum, there are many different topics and categories you may find you want to join in - and if not, please do start one! There is a topic on coping with a stem cell transplant here Having a stem cell transplant which you may want to share your experience on, or perhaps take a look at the life after treatment section https://forum.bloodcancer.org.uk/c/life-after-treatment and talk about your experience of going back to work?

Hope you enjoy the forum!

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Hello @Marilyn,

Thank you so much for sharing your experience with MF with us and I’m so sorry to hear that you lost your mother to AML, this must have been such a difficult time for you. I am pleased you are looking to connect with a new community though and I encourage you to use our forum as a space to ask questions about anything you’re going through and share experiences with others. I wonder if you’d like to join a conversation within the ‘living with blood cancer’ section about your MF, or even in the ‘caring for someone with blood cancer’ section where, if you feel comfortable, you can start a conversation around how felt when you lost your mother – of course only if this is something you would like to talk to others about. Our Support Line Team are also here for you if you’d like to get in touch with us, so do give us a call on 0808 2080 888 (Mon 10am-Friday 4pm) or our support email support@bloodwise.org.uk if ever you need.

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Hi @Debbidoodah , great that you have joined our on line community forum. The number of people diagnosed at a Christmas is spooky, me included. I don’t know if you have looked round the site yet but there are posts on going back to work which you might find interesting, let alone all the other varied posts. Happy rebirth day, certainly something to celebrate and take care of yourself.

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3 posts were merged into an existing topic: Competing in Bloodwise events

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Hello Colly, welcome to the forum. Hope you are doing ok with the treatment though we know it isn’t easy. If there is anything in particular you wish to ask/discuss or share please do as we are happy to help if we can. Warm wishes Anna

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