Hello sherbert03, 

I am so sorry to hear about your poor husband. Our nurses will respond to you very soon but as it's Easter time they will not be back online until Tuesday 18/04. You can also talk to them on the phone on this free number 0808 800 4040 Monday to Friday from 9am to 5pm (but the helpline will be closed on Easter bank holiday Monday). 

In the meantime if you need any medical advice, don't hesitate to ring 111 for advice or even 999 if you feel it is an emergency and it needs urgent attention. 

We're thinking of you during this difficult time. 

Best wishes, 

Lucie, Cancer Chat Moderator

Thanks for your reply. 

No unfortunately I don't have anyone and my youngest has separation anxiety. 

I've seen a GP when my children were at school , but he wasn't clued up because didn't have all the notes through from the consultants at the hospital. 

I'm just trying to understand how my husband is likely to start going down hill as I'm afraid it will be sudden and painful. 

Thanks for your suggestion and coming back to me x

Thanks Lucie.

I will have to wait in that case and pray nothing happens in the meantime. 

Appreciate you taking time to reply x

Hello Sherbert03 and thank you for getting in touch with us.

I am very sorry to hear about your husband's situation and the worry and concern it's causing you.

Knowing how long someone has to live and how they will die is a difficult thing to understand for anyone. This is really best discussed with the doctor and nurses that know your husband. However I realise that this type of conversation can be difficult especially if your husband does not want to talk about it.

I do think that there will come a time when this will be openly discussed with you and the children. It could be that it is just at this time while he is well that he cannot bring himself to talk about it. I do think that as time goes by this will change and conversations will be easier.

I am not sure what your husband's doctors have said in terms of how his health will deteriorate and what will happen. You mention infection and bleeding. Generally speaking these things can happen to people with leukaemia and there can usually be a plan to set up to know what to do if they do. Therefore it is important to talk about this with the team that come to see him at home. This is a plan for caring for your husband at home. Being prepared will help you become less anxious. Do ask even if he is the room because this is something that is important to know about. 

It might also be the case that as his health declines that his care will be taken over by the community and palliative care teams. For example it might be possible for your husband to have some treatments at home or at the local hospice instead of going into the hospital, I am not sure if this would be available but might be something you wish to ask nurses that come to the house about.

It is must be reassuring to have the weekly visit of the nurses and while you might not feel you cannot take them away to talk with them it is likely that they will be aware of the situation. Do remember that they will keep you up dated on any changes and will say if they see that your husband's health is declining.

I do think that as time goes by that your husband will be more open about what is happening. He may change his mind about wanting to know more about his outlook and talk about it with you, this might coincide with a decline in his health. It is possible that to some degree he may already know but just can't bear to talk about it.

While you might not need to see this yet we have some information on our website about dying with cancer that might at some time be helpful to read, you can see it here 

I hope this has helped a little. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Caroline