HU Workshop Newly diagnosed: Newly diagnosed... - Leukaemia CARE

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HU Workshop Newly diagnosed

Irishcll profile image
3 Replies

Newly diagnosed with CLL and need some information on what to expect. When will I need treatment. Really worried.

How will I tell my children?

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Irishcll profile image
Irishcll
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3 Replies
DrunkJam_UK profile image
DrunkJam_UKAdministrator

Hi, I'm really sorry to hear of your diagnosis, I bet it's really overwhelming. I don't have CLL, but, my husband does. So, I can tell you a little bit about his / our experience.

First of all, it's OK to be worried. Leukaemia Care has a really great community support phone line, details here healthunlocked.com/leukaemi... (it's one of the pinned posts too) which is manned by experienced nurses. We've used them if we are especially worried, and found them really helpful, on all sorts of matters.

As to when you will need treatment, sadly, no one can really tell you, and I'm sure lots of people on here can give you examples of different lengths of time before treatment, (my husband was diagnosed about three years ago, and hasn't needed any treatment yet.) Some people never need treatment!

I think the not knowing sometimes can make everything feel even more overwhelming, but, keep asking questions, tell your health care professional if it is all getting on top of you.

As to telling your children, We have an 11yo and a 4yo. They cope with different amounts of information, and need different questions answered. I felt it was important to tell them something honest, rather than nothing, as I think children can tell when something is up. In the end, we explained that something in Daddy's blood means it doesn't work as well as ours (with a bit more detail re cells etc for the 11yo), and he can easily catch the illnesses going round at school, and can feel very tired. Other than that, we haven't needed to a say a whole lot yet. We did also tell school, as, you never can tell when a question is going to occur to them, and, we wanted school to be prepared in case it was a teacher they chose to ask. It also helps because they know we need to be aware of anything major, illness wise, doing the rounds. Ooh, AND, we told the children's GP, and got the youngest vaccinated against chicken pox, on the NHS, (as well as the usual schedule of vaccines - here in the UK chicken pox is not a standard vaccine) due to the increased risks involved.

I hope that's not too much information. I know there are a lot of people on the board who are much more experienced with CLL, and I am sure they will be along to share their experiences, but, do please feel free to ask any more questions, and let us know how it's all going.

2003UK profile image
2003UKChampion

Hi, I can remember how worried, shocked and anxious I was when I was diagnosed. What you might like to do is ring the Leukaemia Care helpline on 08088 010 444 and talk to a nurse or a member of the support team. You can ring Mon-Fri 9am-10pm or Sat 9am-12.30pm. Their website also has a range of downloadable leaflets. Take care of yourself.

Meic13 profile image
Meic13

four years on from the doom and gloom of the diagnosis, I feel more in control of my condition, breathe, learn, read, don't tell people until you have enough information to manage telling! your first year it all about understanding the various components of a blood test and to track what is happening. also 'chronic' is a good clue, most people have a long slow experience of the condition, take care.

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