I am new here. Please can somebody tell me if I am in the right place for this blood cancer ?
Hi @Summertime and welcome to the group. Yes, you’re in the right place and I’m glad you found us!
I have follicular lymphoma, a different type of blood cancer. However, we all share some of the same experiences, thoughts and feelings, especially around diagnosis. How are you doing at the moment, It must all be very overwhelming.
I won’t bombard you with questions but I’m looking forward to finding out more about you, and along with the others on the forum, being here to support and listen.
It’s always good to be aware of the support line as well who can provide a listening ear, useful information and an array of support
Hello, I am new here. I was diagnosed with Acute Lymphoblastic Leukhemia with the Philadelphia cromazone on Tues this week. Totally terrified about the future. I had no symptoms except for some bruises.
I pitched up at a&e to get the bruising checked and was admitted for treatment. Started chemo on Friday ( last Friday I was walking in Derbyshire!). What a life changer.
I am not sure if I am on right forum as most of the posts seem to be about other blood cancers. Could someone help guide me please.
@Summertime welcome to the community, really glad you found us. I’m so sorry you’re going through what sounds like such a stressful and worrying time, I can only imagine what a shock your diagnosis must have been for you. This forum is for anyone affected by any type of blood cancer, so you’re more than welcome here! I’ll put some links below to other threads talking about ALL in case you want to read through/join in the conversations, but also, always feel free to start your own topic sharing what you’re going through if you feel comfortable (you just click the ‘Create Topic’ button top right of the home page).
You might find this thread useful, as people are sharing their experiences of being diagnosed -
Share your story: your experience of being diagnosed - #35 by Erica
And here are a couple of others which might be useful for you to look at
Share your story: your experience of being diagnosed - #50 by paulcarless
Help with inpatient stay - #13 by Franko
How are you doing, do you have much support?
Just to let you know we have a support line which is free and confidential, so do give us a call on 0808 2080 888 or an email at email@example.com if you want to talk anything through with us. Wishing you all the very best
Hi @Summertime, a great big welcome and I think you are in exactly the right place and I am so glad that you have found us.
You must be in complete shock at the moment your situation has changed so quickly and your fears, thoughts and feelings whizzing around, that is so natural, you are now not alone and we are here to support you and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at firstname.lastname@example.org. The Blood Cancer UK website under the heading Understanding Blood Cancer will give you lots of information into ALL and newly diagnosed, You have now entered a parallel universe that speaks a new language.
What I have found useful is writing down everything I want to ask medical people, this could include your fears, thoughts, feelings, questions, symptoms, existing conditions, medications, practicalities etc. I have also learnt to ask that follow up question too and ensure I understand everything. Give yourself time before making decisions too.
I have also found that it does not matter what our diagnosis is we often share similar fears, thoughts, feelings and practicalities.
Be kind to yourself and please keep posting.
@Summertime I just moved all the replies to you to this thread so you can see them all more easily. How are you doing today?
Hi and welcome @Summertime. Wow what a lot to get your head around - which I’m sure you haven’t in a small space of time. From diagnosis to treatment with no warning is a lot to deal with. I’m so glad you have found the forum. We are all here to support you X
I was diagnosed with acute lymphoblastic leukemia (ALL) last July. I was pretty similar to you, diagnosed through a routine blood test, my only symptoms were a bit of fatigue and I was a bit pale from lack of red blood cells although I didn’t notice at the time. I was sent straight to A&E that night diagnosed the next day then admitted to a heamo-oncology ward for chemo. I appreciate how quickly it all happens, I was leading quite an active life as well with absolutely no inkling it could change so quickly. Please feel free to ask me anything at all, I was quite overwhelmed when I was first diagnosed so I’d love to help in any way I can.
Just to add good news is ALL is very treatable and there is loads of research and funds put into it with new and improved treatment regime’s coming out all the time and the side effects of chemo are made more manageable these days with other medications and treatments.
Hi @nbk112 it must have been so tough being diagnosed during Covid times and also not having time to come to terms with the shock before starting treatment, your world literally shattered in 24 hrs and you entered this parallel universe that spoke another language.
It’s great that you can share your experience and support others
I was diagnosed also with ALL Philadelphia positive last year. I was also very terrified when I was diagnosed as I didn’t know much about Leukaemia. After three rounds of chemo, I had a stem cell transplant last August. It’s a long journey! Acceptance and being grateful to survive have been key to me. I would be very happy to respond any questions you may have. Please keep strong, even if the diagnosis is devastating, there is always a treatment and solution.
Hi @praxedes I was struck by how informative and supportive your post was, you epitomised just was our forum is all about.
It sounds as if you have had quite a year in Covid times, it cannot have been easy for you. Don’t forget we and the support line are here for you too, you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at email@example.com.
Take care and it is good to hear from you, have you had support during the year?
Wow, what a year you’ve had! How are you doing now?