Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
its 12.40am and I’m laid in Prinderfields Hospital as diagnosed with Leukaemia on Monday 15th. I have chronic CML 2 . I’m hooked to a drip with antibiotics as when I had the Hickman line fitted, I’ve since got an infection. I only went to the doctor with itchy skin as it was keeping me awake and after a blood test, then bone morrow biopsy, found out if was Leukaemia. I’m devastated and can’t stop crying!
Hi Jacksprat2010 and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear that you have been diagnosed with CML
I am Mike Thehighlander and I help out on the Community. I do not have CML but have lived with a rare type of Non Hodgkins Lymphoma for over 20 years so do understand where you are at and the whirlwind that is going on in your head.
This forum does have lots of folk in it but for some reason it’s not very active but let’s look for some folks to pick up on your thread. I see that you have also joined the General Leukaemia Forum so you may want to post on there as well........but in the mean time I am around to listen and help out as best as I can.
I have had 4 Hickman lines over my treatments and yes infections can find there way in but the IV antibiotics will do the job.
The way you have found out that you have a blood cancer is not unusual as some folks could be living with it for some time before a diagnosis is made.
As I said your head is a whirlwind on “Why me?”....... “Will I get through this?”........ “Is this actually a dream?”
From my long experience this noise will start to calm down once you get a clear plan as to what treatment is being used and how it will be done. So you need to start getting your questions out to your team, start putting all your thoughts down on paper or a phone and at every opportunity get answers..... and remember to keep notes and if you don’t understand something get them to put it in a way you can understand. You will be assigned a Specialist Nurse - these are your ‘go to’ people as they can put stuff into words that are understandable.
With clear information and a clear plan you, your family and friends can put a plan together to get through this. Blood cancers on the whole are very treatable, yes it can be hard work but do-able. You can not do this in isolation so you need to bring family and friends with you.
You can not control the treatment side of this - this is your medical teams job........what you can control is the battle between your ears, once you get this battle under control you will find the treatment journey will become less stressful.
You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be helpful as you can talk to a friendly person that can help in lots of ways including making sure you access all the financial support that is in the complicated government system.
Unpacking your mind can help put some order into this do when you have the time it would be helpful if you could put some information about yourself and the journey that brought you to the Community into your profile as it really does help the Community members to help you and get to know you.
Just click on your username and that will take you to your homepage. Look for ‘Edit my Profile’ click on it and start to tell us as much or as little about yourself as you want then click on save before closing the page.
You can see my journey by hitting Thehighlander
I am always around to help out - Keep posting as this does help a lot.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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