This is my first post, it’s all new to me like it was to everyone I guess. I hope everyone is ok as you can be.
My mum was told yesterday that she has leukemia, they think it’s ALL rather than Acute Myeloid Leukaemia but will know in the next few days for sure.
She will be having chemo and blood transfusions etc which will start next week.
I’m at a complete loss at what time do. I hate reading things which say how quickly you can lose someone with ALL (she’s 63) she said she feels ok at the moment (health wise) has anyone got any positive things for me to hold on to? Please.
Hi @Rebeccah84 I can hear your fear and anxiety in your post and you are definitely in the right place, you must all be in complete shock, I know I was when I was diagnosed and it all takes so long to process and you are completely powerless over it.
I was diagnosed at 53 yrs old with Chronic lymphocytic leukaemia (CLL) and that was 18 yrs ago.
It sounds as if your mum has a plan for her treatment. Hopefully she will get to know her medical team that are there to support you all. If she gets a CNS (Clinical Nurse Specialist) they are often a good contact point.
You and your mum perhaps could write a list of all the fears, thoughts, questions and practicalities you want to ask at her next appointment, there is no such thing as a silly question and ask for clarification if she doesn’t understand something.
Medical jargon can be like another language.
I always take a list of my medications, dates of significant medical issues in my life, practicalities, any allergies etc. to appointments and take notes whilst I am there.
As to what you can do personally I would ask your mum what you can do to help practically and give yourselves the time and space to really talk and be able to share your fears, thoughts, feelings and practicalities.
Also you can really share how it is for you on our forum and if you would like to speak to someone the Blood Cancer UK support line is there for you.
A handy tip is perhaps don’t search the internet too much.
Look after and be kind to yourselves you have had a tremendous shock, please keep posting
You are definitely in the place where you can get support. I was diagnosed with Polycythaemia vera (PV) and I have found my daughter a tremendous shoulder to lean on throughout my blood cancer experience. I know it is almost as heartbreaking for your nearest and dearest as it is for the person who has blood cancer. Ask her what irritates her most and try to remove that irritation, in my case it is seeing my garden neglected, in the past it used to be that my windows needed cleaning as did the silver and brass. Silly unimportant things to anybody else but they do matter to the person who can’t do them. My daughter finds walking helps keep her upbeat and able to put up with my mood swings… it is important that you take care of yourself and your own health. My best wishes to you and your mother. Marylin
A really warm welcome to our forum and i am so pleased you have found us. I hope you are doing okay today?
I am so sorry to hear of your mums recent diagnosis. You both must understandably be feeling lots of things right now as a new diagnosis does bring with it a rollercoaster of emotions.
It also will feel like you both have a mountain of questions, particularly if your mums diagnosis is yet to be fully confirmed.
As others have brilliantly already said- please do reach out in any way to any support you can. A clinical nurse specialist team will very likely be assigned to your mum under her haematology team and can be a great resource to you both should you need to have anything answered or raise any concerns along the journey of treatment etc.
Please do also know that should you ever wish to talk anything through with us in the support team we can certainly arrange a call with you or indeed your mum. You can get in touch anytime- Blood cancer information and support by phone and email | Blood Cancer UK.
In case it’s helpful, we also have a newly diagnosed booklet that you or your mum may find somewhat useful as it shares others experiences, offers practical support and talks through what you might expect after being diagnosed- Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop.
You can also order these in booklet format to be delivered to your house if that is helpful at all.
It sounds like your mum is in really good hands and that her team are being proactive and starting treatment quickly. It is also great that she is generally well and fit going into treatment as this will certainly help.
Again Rebeccah please don’t hesitate to get in touch if you would like to talk anything through as you both learn more over the next few days- we are always here for you.
Take care of yourself, Lauran
Hi @Rebeccah84 and welcome to the forum.
It must be so difficult for you and I can understand how worried you must be. I read everything when I was diagnosed with lymphoma but sometimes, the information I read was frightening.
I can see you have already been given great advice. This forum will be a great support to you and the Blood Cancer support team will be able to answer all of your questions X
Hi Im recently diagnosed with Polycythaemia vera (PV). A big shock. My wife suggested I record the sessions with the hospital and listen back later. Really worth while as I was amazed at what I’d missed
That’s a brilliant idea @DougyW. I always take somebody with me and make notes but this would ensure nothing was missed or misunderstood!
Hope you are recovering from your diagnosis shock and starting to live with Polycythaemia vera (PV). It seems to affect different people in different ways.
It is a really good idea to record. Your consultations. Mine are telephone consultations and I think technology would defeat me if I tried to record them, I think I will stick to my pen and pad and continue making notes. Take care of yourself, Marylin
Yes, recording would be too much for me too @Marylin and perhaps I would need to tell the other person that I was recording the session.
Look after yourself
Hi @Rebeccah84 I have been thinking about you and just wondered how things are with you and your mum?
Look after yourselves