New here? Feel free to introduce yourself here 👋

Hi Jacquie, A great big welcome and yes, this is just what our community forum is all about.
Working full time can be tough it was for me and I found it difficult to ask my needs and how both me and my company could both be benefit. A diagnosis is life changing and it really effected me emotionally as well as physically and that was really exhausting. Perhaps we cannot be positive all the time, I am far more emotional now. Please share, if you want to, about the tough times.

Hi, this is the one problem that is not logical and you cannot fix and that is very frustrating. Take care.

Hi Sarah and tess, @WrittleWife, Yes, this certainly is a community forum and with rarer conditions it certainly gets people together. Take care both of you and keep posting.

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Hi Roger, welcome to our community forum. I cannot help medically but keep sharing your fears, thoughts and feelings I expect many of us will relate to them, we are all here for you.

Don’t worry I still have challenges navigating this site, but it is worth it because with practice I am getting better with modern technology. I went for my blood tests today after 15yrs on W&W and I still get an apprehensive sick feeling in my stomach.

5 posts were merged into an existing topic: MGUS (monoclonal gammopathy of undetermined significance)

Hi my name is Colin i am 63 and have recently been diagnosed with CMML,i am still waiting to find out if it is stage 1 or 2.Lots of sleepless nights at the moment.

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Hi Colin, a great big welcome to our community forum which I find is jam packed with interesting posts. I bet you are having a lot of sleepless nights at the moment, in the words of the Mamas and Papas (and others) the darkest hour is just before dawn and I find at night my mind just goes into overdrive. Also don’t forget you have received potentially life changing news so I expect you and you body are in shock emotionally and physically. If you feel the need to contact the Bloodwise support line on 0808 2080 888 they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. also we are all here to support you so please keep sharing how you are and how you are feeling and the results of your diagnostic medical appointment.

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Good morning! Yes me too I can’t get used to the site and I also lose messages lol!
I’m so glad you are feeling generally well. I also have aches and pains but not sure if that is me getting older or that I have not been as active as I used to be. I find if I sit for a certain amount of time I have back pain etc. I’ve started Pilates to hopefully ease it though.
My treatment was spread over 16 months. I would have my Velcade chemo every week for 4 weeks and my Rituximab once in that 4 week cycle. I would then have 8

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Sorry Ann! It somehow sent before I could finish message! Told you I’m Good morning! Yes me too I can’t get used to the site and I also lose messages lol!
I’m so glad you are feeling generally well. I also have aches and pains but not sure if that is me getting older or that I have not been as active as I used to be. I find if I sit for a certain amount of time I have back pain etc. I’ve started Pilates to hopefully ease it though.
My treatment was spread over 16 months. I would have my Velcade chemo every week for 4 weeks and my Rituximab once in that 4 week cycle. I would then have 8 recovery and then start the 4 week treatment again and so on.
My paraprotein at the time of diagnosis was 52 and is currently down to 6. I’m coming up to another 3 monthly check and generally feeling ok thank goodness.
What hospital were you treated at? I have to travel to London UCLH Cancer Macmillan Hospital. Great place.
Sara xxx

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Welcome to the forum Colin, I hope you find it a useful place to be. I’m sorry you’re currently waiting for results, I can imagine it’s a very worrying time and I hope you have some support around you?

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Thank you to you & @AnnD for talking so openly, it must be lovely to connect with someone else with WM! If you’d like, can I suggest perhaps making a WM thread in this section - https://forum.bloodcancer.org.uk/c/living-with-and-after-blood-cancer (I can help you with this if you’re finding the site difficult to navigate) as others with WM may find your posts really useful, and it would be good to have them in an easy place for others to find. Take care, and thank you for posting!

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Hi Sara and @AnnD I also get a lot of back pain, due to also having osteoporosis and several healed fractured and crumbled vertebrae and pilates has really helped me over time. It also means I have friends in the class and it is the only thing that clears my mind as I really have to concentrate on it. Although I often wear my Bloodwise tee shirt a lot of people do not even know I have CLL, which is rather nice, I am just Erica. I would recommend pilates to everyone in life, however fit, young or old. Please keep posting both of you we are all here to support each other.

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Hi I’m Corrina I’m currently bring treated for AML at St Bart’s. Treatment is going well but has been tough…
Just wanted to wish everyone else well that is having treatment too.
Thanks

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Hi Corrina, great tp read your first post, you are really welcome to our community forum.
I have CLL and I am lucky enough to be on watch and wait. Although I was diagnosed 15 yrs ago I still get a yukky feeling before medical appointments. What I have noticed is that we all seem to share similar fears, thoughts and feelings and we are the ones that seem to really understand. Often my thoughts come on in the middle of the night. How are you?

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Nice to have you. A great place to share x

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Hi Corrina

I was diagnosed with AML in 2015, its always nice to ‘meet’ another patient (though I know it sounds odd to say its nice but hopefully you know what I mean)

I was treated at Lincoln hospital in Lincolnshire so I was the only patient as its a rural area and I am quite isolated here so this forum and social media has been a godsend to me.

How are you feeling at the moment? Don’t worry about being open and honest here because I have found it very beneficial, from my experience you can’t always do that with loved ones.

As you say treatment is very tough, I remember it very well, its still very fresh in my mind. nothing you are feeling, dealing with physically or emotionally is unusual and what I mean is it can feel like you are the only one and some of the feelings are ‘silly’ but there is probably nothing I haven’t felt or thought.

Please feel free to ask me anything, I’m happy to use my experience to help if I can

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Hello everyone. My name is Simon (41 with wife and two young daughters) and I have just been diagnosed with CML. I have started treatment with Imatinib and hopefully this works well for me in coming weeks. Been a difficult few days speaking to family, friends and work colleagues, but feel fortunate that I have a condition that has an excellent drug to manage it. Fingers crossed everything goes well in the near future.
Thanks to the Bloodwise team for the excellent information and booklet which explains a lot about CML. Will certainly be posting any questions on here and looking for shared experiences with CML and Imatinib in due course.
Regards, Simon.

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Hi Simon, a great big welcome to our community forum, thanks for introducing yourself. When I was newly diagnosed I found it very difficult to explain to family, friends and work as I was still in shock and could not explain what I did not understand myself. I am glad the Bloodwise team have been there to help you, I have also found them very helpful. I found I became ‘Erica, with leukaemia’ for quite a while. I actually found it was most difficult with work as I had always been the one never to have a day off sick, being efficient and reliable. Suddenly my bosses realised that they did not really know what I did to get the results. They worried about my mortality and then started holding meetings without me and taking all the proactive roles away and leaving me answering the phones. I think you might find we all share similar fears, thoughts and feelings no matter which blood cancer we might have. How have you approached telling your 2 young daughters and how have they processed the information?

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Welcome Simon, hope you find being part of this forum helps with dealing with your diagnosis. I know its helped me. Pleased you have found the right information so far

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