My mum has Chronic lymphocytic leukaemia (CLL) leukaemia which is under control. She has however been not very well for the last 4-6 weeks (tiredness, breathlessness, not walking as far in the park). Culminating in her being very unwell these last 2 weeks, vomiting, tiredness, stomach pains, diarrhoea and dizziness. We initially thought she had a bug, everyone seems to be ill at the moment. I am however now concerned that she doesn’t appear to be getting better. I am also concerned that she should have spoken to the doctor earlier, as soon as she felt ill (as she has Chronic lymphocytic leukaemia (CLL) and may need extra support).
I suppose what I am asking is, should we be seeking medical support now? And what do people typically do when they start to feel unwell? Just get on with it or contact their gp or hospital consultant?
This is all very new to me and I am very worried about the decline in her condition.
Welcome to the forum - although I’m sorry that worry about your mum has brought you here.
I’m not a medic, so this is an ordinary person’s (who had acute leukaemia) advice. Personally, I would get in contact with her haematology team and her GP as soon as possible tomorrow, and I would ring NHS 111 right away for further advice now. It’s a long time to be ill; she’s not showing signs of getting better, and she feels fatigued and breathless. Also, if she’s had vomiting and diarrhoea for 2 weeks, she may be malnourished and dehydrated.
Hi and welcome @jimjam99, @Fullofbeans has answered your question so well.
I think I always immediately think it is my Chronic lymphocytic leukaemia (CLL) when I find a lump or bump or get any symptoms and yes, there are a lot of nasty nasty bugs out there plus Covid and flu.
We do have to be more careful with Chronic lymphocytic leukaemia (CLL) and to nip relevant symptoms in the bud.
I am also not a medical person but having 2 weeks of vomiting, stomach pains, diarrhoea and dizziness sounds too long to me and will make someone tired, feel ill and feel very unwell.
Please let us know how your mum gets on and in my experience I can deplete my batteries very quickly, but it takes me a long time to build and refill my batteries up again.
Please look after yourself as well as you are looking after your mum.
Dear @Jimjam99
Thank you for posting and I am very sorry to hear that your Mum continues to be unwell. It is understandable that you are concerned.
My advice is to initially call the Haematology team the look after your Mum, does she have a Clinical Nurse Specialist that you can call for her? Is she on any treatment for her Chronic lymphocytic leukaemia (CLL)? I would also have all her symptoms written down with dates of onset and severity documented too. I would also ask your Mum of she has had any of the following:
Night sweats
High temperature
Enlarged lymph nodes
Weight loss
Reduced appetite
If she has had any of these please do report them to the Haematology team.
I hope that you get some support and do call us if you need to talk things through:
You can call us free on 0808 2080 888 to speak to a member of our trained blood cancer support team in confidence. Our phone lines are open:
Hi definitely get it checked out by speaking to gp, nurse of ring the helpline above from erika. I have Chronic lymphocytic leukaemia (CLL) and been coasting along with regular bloods and watch and wait. Started to get new symptoms of headache tinnitus stomach cramps and pounding heart 3 weeks ago. Blood test today showed my heamaglobin dropped significantly so in for urgent transfusion this week. Wished i had acted sooner but glad i rung the helpline for advice and they were so helpful and understanding
Hi @TynLlwyn08 thanks for the update and yes, the support line are brilliant aren’t they.
Please let us know how the transfusion goes and how you are feeling.
Be very kind to yourself
Thanks to everyone for all the advice. She seems to have turned a corner this week and is much stronger.
In terms of my Mums conditions I don’t know what she has been told about support to manage her condition. I am not aware that she has been given a direct line to contact at the hospital if she has any concerns re her health. She also seems to be unaware that she should be seeking help if she feels unwell. She feels it’s all a fuss about nothing. Her next appt for bloods is in July and she doesn’t feel she needs to do anything in the interim.
The difficulty of the situation is compounded by the fact that my mum has also been diagnosed with Logopenic dementia (a rare form of dementia that affects her speech and writing but the impact to memory is less than other dementias).
With all the bad news health wise, she has stuck her head in the sand and will not acknowledge when she feels ill. She is also struggling to talk now and is loathe to make any calls herself as she can’t communicate. It’s a very difficult situation as I don’t want to overstep and antagonise her
On a positive note she seems to be feeling more herself now and at least I know what our options are the next time she feels unwell.
Hi @Jimjam99 thanks for the update.
Some good news and some not so good news about your mum.
Does your mum’s Logopenic dementia diagnosis mean that you might have to communicate on your mum’s behalf and might that have to be formalised in some way, I don’t know?
You are still in the middle of such a delicate situation, please do care for yourself as well as you are caring for your mum.
We and the Blood Cancer UK support line on 0808 2080 888 are there for you so you can say what it is really like being you.
