Hi there. I think itās reallly great that youāve joined. I know my mum finds it really difficult to cope with my diagnosis and has so many questions and thoughts to share. I hope this group gives you some great support x
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Dear Judith,
Itās good that you reached out for support
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Hi Judith, this site is definitely here as a community forum for anyone affected by blood cancer. As you show you certainly have been affected as a mum, with 2 daughters, that have actually been through it in different ways. I have CLL, but what I have found is it does not seem to matter what our relationship is to blood cancer we all share the same fears, thoughts and feelings. Our worlds have been turned upside down. My mind can be like a washing machine with all my fears and thoughts whizzing around. As a mum you also have the maternal pressure of feeling you have to be the strong one for your girls. All these aspects can certainly take a toll on you, I know from experience, so please take care of yourself and spoil yourself once in a while, oh, and keep posting, we want to know how you are.
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Hello jj631,
Thank you so much for sharing your experience with us regarding your diagnosis of chronic myeloid leukaemia. I am so sorry to hear about your diagnosis and I honestly cannot imagine what you and your family must be going through especially since it has only been almost two weeks you have found out this information.
Its fully understandable that you feel itās hard, but courageous that you are facing it with such positivity.
I hope you are finding the Bloodwise online community forum helpful in connecting with others in similar situations as your own.
If you have any other questions, concerns, or need some additional support regarding blood cancer information, please do get in touch with our support line at 0808 2080 888 Mon-Fri 10am-4pm Weds 10am-1pm or you may choose to email us at support@bloodwise.org.uk.
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Hello Alfie,
Thank you so much for sharing your experience with us regarding primary plasma cell leukaemia. I am so sorry to hear about your diagnosis and I can only imagine what you and your family must be going through; especially after falling ill with kidney failure and on being on full time dialysis. How are you finding this?
I am pleased to hear that you are having a good quality of life and are creating happy memories.
I hope you are finding the Bloodwise online community forum helpful in connecting with others in similar situations as your own.
I am sorry to hear you have found information thin on the ground. Please do read through our information pages HERE if that would be helpful, and you can call our support line team at any point as well if you wanted to talk through any of this information. Our contact details are 0808 2080 888 Mon10am-4pm Weds 10am-1pm or you may choose to email us at support@bloodwise.org.uk.
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Hello @Jude1,
Thank you so much for sharing your experience of your daughterās diagnosis with ALL. I am so sorry to hear, and I canāt imagine how difficult it has been for you and your family; especially since she has such a young child as well. However, I am delighted to hear that her sisters was a match for a stem cell transplant and she was able to achieve remission.
Sharing your experiences with other mums and dads here will be incredibly valuable and being able to talk to others who understand your situation and all of the emotions that come with it is so important. I hope you find our community a supportive space for you, so please do join in the conversation HERE
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Hi, Iām Christa, Iām 64 and have non hodgkins lymphoma, Iāve just finished my last round of chemotherapy in November, will get my results in January to see if Iām in remission 
The last year has been a whirlwind of hospital appointments , but hopefully light is at the end of the tunnel.
A very Merry Christmas to you all xx
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Thank you very much for your email.
I am feeling very well at the moment,
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Thank you Anna for your warm welcome. I look forward to gaining more insight into CLL from members.
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Hi Christa, a great big welcome to our forum and thanks for introducing yourself. You have had quite a year and I think you make a very good point about your whirlwind of hospital appointments. I donāt think you can underestimate the toll hospital appointments take in so many ways, I find the whole thing so stressful, the getting there and back, making sure I am not late, the waiting, let alone the appointment, remembering all my fears and questions etc, etc., the answers. I also find it so tiring and fatiguing. I wonāt even get into cancellations and tests. Those feelings have come straight back to me. How is it for you? I hope you have a restful, healthy festive season.
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Hi Alice, there is quite a lot of posts and information about CLL on this site, I have CLL and was diagnosed in 2003 and I have been on watch and wait (active monitoring) ever since so I have been a very lucky girl. However I did not deal with the fear, anxiety, thoughts and feelings very well initially. I have posted quite a bit on here. I hope you will find this forum interesting, supportive and informative.I would be interested to hear more about you and any questions please ask.
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My name is Katherine I am 49 , I have non Hodgkinās lymphoma. Grade 2A unclassified type. I had neck pain and felt a little bit tired, my GP said I may have vitamin D deficiency. My tonsil began to swell and a lump appeared in my neck. A CT scan and a biopsy revealed lymphoma but the pathologist at the QE Birmingham couldnāt classify it, he got a second opinion from a Heartlands pathologist but he couldnāt classify it either. It was growing rapidly so it was decided that I would have R-CHOP but I had a bad reaction as my heart went into AF. I now have chemo over 2 days every 3 weeks. The lump in my neck disappeared after the first chemo. I had a PET scan and a bone marrow biopsy( which felt strange but I didnāt use the gas and air so I seemed to have coped with it). A huge thank you goes out to all the people who have taken part in a clinical trial or a drug trial, their participation, and all that they must have go through, means I have the drugs to help me get through each chemotherapy.
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Welcome to the forum. I had my SCT at Heartlands for aggressive relapsing HL. There does seem to be good co-operation between the haematology depts in the Midlands. I hope you continue to improve with your treatment, and find support on the forum
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Hi everyone, Iām Lizzie diagnosed with AML July 25th, I am oncology/ heam sisterā¦ and was only diagnosed thanks to one of the lovely consultants I worked with who was concerned for me when I kept getting repeated bouts of shingles. Soā¦ as you can imagine itās been incredibly difficult being on the other side, however the amount of support from my consultants, nursing team and my beautiful patients has been amazing and given me strength through my darkest days.
I am being admitted New Yearās Day for my transplant and must admit to feeling rather daunted by the prospect. Sometimes knowing too much can be a hindrance especially as a nurse in this business!
This site is amazing by the way!
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Hi Lizzie, as you say it must be so, so difficult to be āon the other sideā. Even though you were diagnosed in July you must still be so shocked, anxious and fearful, I was. My thoughts and feelings were all consuming and just whirred around in my brain, especially at night. Being on this site I now realise that it was normal. The body has had such a shock it is on high alert to danger. You now have everyone on this siteās support too. Take care and please let us know how you are when you can.
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Thank you Erica I certainly will,
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A very difficult time for you. Really hope you get some strength from this group. Sending lots of positive thoughts and wishes your way. You take care of yourself x
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Thank you Nichola Iām sure I will x
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Welcome to the forum,
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Hi @Lizzietheliz1, thank you so much for joining the forum and Iām glad youāre finding it valuable. It sounds like you have some incredible colleagues working alongside you and I wish you all the very best for your transplant tomorrow.
Do let us know how it goes and if you need any more support then do get in touch with our support services on 0808 2080 888 or support@bloodwise.org.uk.
In the meantime, one of our community wrote some fantastic blogs during and after his stem cell transplant - I wonder if this one might help at some point: https://bloodwise.org.uk/blog/catch22?
Our very best wishes for tomorrow,
Kate
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