Hi
I'm Sue and I have recently been diagnosed with acute Lymphoblastic leukaemia, which I am being told is not as common in adults.
I have done my induction cycle spent 30 days in hospital, and am waiting for my 2nd cycle to start which has been pushed back due to my neutrophil count being to low for them to do my bone marrow biopsy last week.
I didn't get much time to process what has happened, I was sent to A&E after calling 111 with expected kidney infection, a few hours later I was being blue lighted from one hospital to another and put straight on chemo that night, it was all a bit of a whirlwind.
This year was meant to be the best year of my life as I was due to be getting married at the beginning of September so had all sorts of fun hen do and an amazing day to look forward to but we have had to cancel this for now, I feel like I have gone from having it all to having it all taken away.
And insight into what to expect treatment wise going forward and any coping tips anyone can offer will be greatly appreciated.
Thanks in advance
HI Sue84 and welcome to this corner of the Community although I am sorry to hear about your ALL diagnosis. I am Mike and I help out around our various Blood Cancer groups.
I don’t have Acute Lymphoblastic Leukaemia (ALL) but I have been on my cancer journey since 1999 when at 43 I was diagnosed with my first rare (8 in a million) incurable but treatable type of Cutaneous T-Cell Non Hodgkin’s Lymphoma…. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.…… (I also have Asbestosis and Prostate Cancer)
coping tips
Trust in your clinical team and trust them to navigate this for you…. find out as much as you can about ALL from reliable sources…… not random google searches and look for opportunities to actually ‘talk’ with others.
Back in 1999 our daughters were 14 and 18…… the then median survival rate for my first type of Lymphoma was 3-5 years….. but the developments in treatment has ment that I reached my 70th birthday last Nov and am living a great life…… and I have see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters… remember there is always hope and don’t stop dreaming.
Let’s look for group members to pick up on your post and get back to you.
You can also click on the main ‘ALL Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
You may want to check out Leukaemia Care UK who the main UK Leukaemia charity, they produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing.
Always around to help more or just to chat
Hi Sue84 firstly sorry to hear about your diagnosis and how it has impacted your wedding plans, secondly keep your fighting spirits top of your list for now and you’ll get through this I’m sure & lastly only use the main cancer care websites for the most accurate information.
I was diagnosed June 26 with ALL b-cell
It sounds as though we are at the same stage in our treatment. I came home last week having spent 25 days in hospital. I had another bone marrow biopsy yesterday and I have my appointment with my specialist ALL consultant next week and then I will commence my next phase of treatment but this is going to be on the daycare unit and I have been told it will be 4/5 days a week over 4 weeks.
Re: kidney damage I have been advised that I have suffered some kidney damage but my advice is drink as much water throughout the day to ensure you flush through the chemo treatments as much as possible, I have never drank so much water, I think I wore a path from my hospital bed to the bathroom 
now I’m home I keep bottled water in the fridge so I can monitor my intake.
My best friend went through breast cancer 5 years ago and she has been there for me along with my husband and family. She bought me a journal and told me to keep daily logs and ensure I wrote in about my thoughts especially the fears, getting any negativity out of my mind so I could focus on the positives. It’s working for me. I started at day one in hospital and I named it my journey to recovery.
Also while in hospital the local cancer care charity therapist visited me and I had some Reiki and hypnotherapy/relaxation and visualisation sessions, these also helped as I was able to use these to improve my mood after.
Good luck & take care on your journey to recovery x
Hi Ironlady and a warm welcome to you.
Your community name did put a little smile on my face having lived through the Thatcher years…. 
My friends gave me the name because they said I’m coping with everything so well & when I come out the end they might promote me to Titanium 
but yes I remember those years too
