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 firstname.lastname@example.org 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 email@example.com. 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 firstname.lastname@example.org.
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?
I was diagnosed with the same on Thursday. My world has come crashing down. I feel so heart broken for my children. I am in hospital waiting to start Chemo on Wednesday. No idea what the road ahead will be like but I am grateful to hear others experiences.
I had no idea it was blood Cancer, I just thought I had injured myself while working out. All very strange.
Thank you for sharing your story
Wow, you must be in complete shock and experiencing such a range of emotions - especially as treatment has started so quickly! I completely understand how your children are your first thought - they were mine and still are four years post diagnosis.
There will be so many people on here who can share their experiences with you. What we all share that initial fear, shock and complete disbelief that this is happening to you. I am so glad you have found us! The support line would be really useful for you to.
How are your family doing? Are you managing to speak to them?
Please keep posting and sharing. Sending so much love and a huge hug and will be thinking of you on Wednesday. Please let us know how it goes x
Wow, @Northernsmito26, welcome and I am so glad that you have found us so quickly.
You describe the feelings and thoughts I had when I was diagnosed so clearly, I came home and wrote my will and funeral music, that was 17 yrs ago. My life plan just instantly fell apart.
I had no idea that I had blood cancer, I had just had a gynae op and healed but felt so ill, fatigued and yukky.
I was in complete shock for a very long while.
I had entered a world with a new language.
You have the extra whirlwind of starting treatment so quickly.
@Nichola75 has given you good advice.
You are not alone or isolated we are all here to support you and your family, the feelings and thoughts you are having are so natural.
The Blood Cancer UK website has lots of information on it for you and your family.
Please keep posting more about you and do ask your medical team all your fears, questions etc, and ensure you persist till you understand what you need to.
Look after yourself.
I’ve been thinking about you @Northernsmito26. How have you been these last few days X
Sorry I have just seen these replies. Thank you so much for replying.
I’m okay. I have had some ups and downs. I started Chemo but couldn’t have the different chemotherapy I’m having the other day due to my liver. Apparently they said it is toxic on the liver and they think the medication has effected my liver so I have to wait. It is slowly getting better so that’s a positive.
I’m okay, still in a bit of shock and I’m missing my kids so much. Have moments when I want to run off and escape and then moments when I feel calmer.
It’s just so quiet in here, it’s deafening.
So nice to hear positives and how you have got through this. I really need to read that, so thank you.
My goal is enjoying time at home in the summer holidays and going to the beach with my children. Thank you again for replying xxx
Hi @Northernsmito26 I think it is normal to have emotions all over the place and yes, I expect you are still in shock.
Perhaps you are feeling lonely and isolated as well.
You must also miss your children so much.
That saying about silence being deafening is so true isn’t it.
We are all here to support you through this so please keep posting.
Hi @Northernsmito26. It’s really good to hear from you!
I love the fact that you have a goal for the summer and that there have been some positives in your treatments.
Wouldn’t it be great if we could all escape together for a while!
It’s only natural that those emotions are up and down - just go with them.
Please keep us updated on how you are doing. Sending extra special wishes