Hello, wonderful people in the community.
My father has been recently diagnosed with acute myeloid leukaemia intermediate risk after 3 months of investigating the reasons for the low haemoglobin in his blood count. He finally started his first non-invasive treatment 3 weeks ago, but after his first chemo, he developed an infection and has been fighting with a high temperature in the last 12 days. His haemoglobin levels are not picking up despite the blood transfusions and it seems that the antibiotics he is on don’t work. His second therapy is scheduled in a few days, but I am feeling a sense of despair that we’d need to postpone it and his illness will keep progressing rapidly. My biggest nightmare is that therapy may not be at all possible from this point.
I am writing here as although I have lived in London for the last 15 years, I am currently in Sofia, Bulgaria where he is hospitalised. Unfortunately, Bulgaria is not a place offering support to patients and their families and I am trying to connect the dots and deal with it all on my own away from my partner and friends in the UK. I just wanted to reach out to people who have been in a similar situation and seek advice on how to manage such a difficult time. Many of my local friends have been feeling awkward or withdrawn since he fell ill, so any message of support would be hugely appreciated. Thank you for your kindness, Krasimira
I am so sorry to hear of your situation. You say your father is hospitalised. Do you mean that he is actually in hospital or just under hospital care?
If he is at home it is important that they know his temperature has not gone down. For all of us who have had blood cancers, fighting infections is so very important. If the antibiotic is not working a test to show the exact infection type could help get a better antibiotic for that exact infection. They do this in Spain but here in England doctors often use a broad spectrum antibiotic and only switch to a different one if it does not work well enough to clear it. I am not sure about Bulgaria but if he is not feeling well he may not have had the energy to tell them.
I do hope that he brightens up and gets his next treatment.
A very warm welcome to our forum. I’m really pleased you have reached out for support, as it sound like you & your family are going through a really difficult time just now. Please do know that if you ever need to talk things through our free & confidential helpline is open Monday- Saturday on 0808 2080 888.
Its really understandable to have lots of worries & anxieties around your fathers care. Unfortunately it can be common for those undergoing any treatment for blood cancer to require a break in treatment due to infections. As Grandma Jo has already identified- often if an infection is being stubborn, blood cultures can be taken to help identify the most appropriate type of antibiotic.
I wonder whilst you are out in Bulgaria, if you have contact with your fathers treatment team at all? If so we would encourage you to keep raising any concerns you have with them and also don’t be frightened to ask questions.
Again please do know we are here for you in any way we can be.
Take good care, Lauran
Thank you so much for your message and for taking the time to share all this information. This is so helpful and makes me understand better what my father is going through and the ways I can support him. He is in hospital at the moment and as you suggested, they do use a broad-spectrum antibiotic till they find what works for him. I will be discussing what you mentioned about Spain’s experience with his doctor. Once again, thanks for your kind support, this really makes a difference.
Best wishes, Krasimira
Thank you for your support and for sharing this valuable information, I will seek support and be braver in asking questions and contact my father’s treatment team to discuss my concerns.
Hopefully, things will get better, but in tough difficult times, I will reach out to your helpline, sometimes just talking through your anxiety and fears is of huge help.
Many thanks for being so kind and supportive.
Hi @Krasimira Welcome to our forum.
It really comes out of your post how caring you are for your father.
I have noticed that every country approaches treatment, caring, support and medicines differently.
Perhaps write down all your fears, concerns and questions, then talk to your father to see what he thinks and whether he would like add any.
See if he would like to ask them or would he let you ask them.
Be pleasantly assertive and ensure you cover everything.
Unfortunately infections are very common and treatment can feel like a rollercoaster medically and emotionally exhausting for everyone.
Really look after yourselves and please do keep posting how you both are.