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My mum has just been diagnosed with Leukemia, just need sime advice and support

Nicola1115
Posted by

My mum has just been diagnosed with Leukemia age 53, it come on so quick and it's such a shock. I need some support I'm finding this really really hard

Nicola1115
Thehighlander
Posted by

Hi  and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your mum’s diagnosis.

A cancer diagnosis can bring a lot of stress, confusion and many questions on all the family but talking with people who are on the same journey can help a lot.

We have a number of Leukaemia Support Groups so have a look through our list of Cancer specific groups.

Just follow the link I have created then once you find the group that best matches your mum’s type hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

I have lived with a different type of Blood Cancer for over 20 years. Yes some of the treatment can be hard work but I am still around and doing good.

I will keep an eye open for you on the groups ((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Nicola1115
Posted by

Thank you so much for replying to me xx

Nicola1115
Thehighlander
Posted by

Hi Nicola, you do need to find out the exact type of Leukemia she has as the treatments for each type can be very different x

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Nicola1115
Posted by

She is having a bone marrow tomorrow, we are so scared. What if they tell us she only has a little while to live??? I cant cope and I'm finding this so so hard

Nicola1115
Thehighlander
Posted by

So the BMB will indeed type her Leukaemia, give an indication as to the stage and with this the correct treatment patch with be put in place. The results will take a while to come back so you are not going to get immediate answers. 

In blood cancers, unlike solid tumour cancers a high stage number is not as bad as in other cancers..... I was stage 4a2 when I started my chemo but I am still around years later.

This is a hard time, everyone will say that this is the worst time as you do not have a clear vision of the what this all looks like. I remember my team saying you have a few years................ but we hope to prolong this with this treatment journey and so far so good.

Without clear information you are going to over think this....... easy for me to say this - but all the worry in the world will make no difference to what the consultants will say..... save your strength and concentrate on supporting you mum through this hard part of the journey ((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Paul1969
Posted by

Hi

I hope things go as well as they can today. I can remember when I was first diagnosed with ALL and the disbelief and denial that I had. My diagnosis was quite quick at my local hospital and I had my treatment at Barts.

I think when you hear the word leukaemia you panic and fear the worst straight away but the treatments and advancements in medicine mean that more and more people survive the disease. I was diagnosed in September 2012 and went on to have a stem cell transplant in May 2013. Now almost 7 years later I lead a very normal life. It was a hard slog for a couple of years but with support form my wife, family and friends I got through it. 

Once you know what type of Leukaemia it is and the proposed treatment let us know and we can direct you to the right group so you can get support form people who have had the treatment / having the treatment or have a family member going through treatment.

Paul

What is a Community Champion?

You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

 

Nicola1115
Posted by

Thank you so much for your message and its lovely to read your story knowing you have come out the other end all ok, mum starts her chemo tomorrow and they are going straight in, they are testing her brother to see if he is a match for bone marrow, am I able to put myself forward too? They said I have to register which is fine but where do I register? Thank you xx

Nicola1115
Nicola1115
Posted by

Thank you so much for replying to me and telling me your story. I'm so pleased everything worked out for you and it gives me hope for my mum xxx

Nicola1115
Thehighlander
Posted by

Hi Nicola, things are moving fast and it’s hard to keep up with everything.

The fact that they are moving on to Stem Cell Transplant (SCT) says that they are looking to move her in a positive direction.

A few of use have been through SCT and for me I have been through two Allo SCTs with stem cells from my brother.

Do ask about being tested and there is a world register that can be searched.....but this can take time.

This is a rather different journey that your mum and the family are about to go on but we actually do have a dedicated Stem Cell Transplant Group where many folks support each other on the SCT rollercoaster.

Do come and joins the group and introduce yourself to the group ((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela