My brother is very ill in hospital with a severe infection following chemo. I desperately want to be at his side, but I have a slight cough (which I'm just getting over). What should I do?

Hi Hayley,

Thank you for your message. I’m so sorry to hear that your son is in the same situation as my brother. Since I started writing this message I’ve listened in via the phone to another consultant who’s been into see Andrew. I believe he was a haematologist. It sounds like my brother’s white blood cell count is coming back up, so I ought to be able to get in there and look after him tonight, to give my poor old mum a break. They both sound at the end of their tether. I’m going to go and get ready now, so I’ll keep you posted as to how we get on. I really hope that things improve for your son Nicholas. Please take care of yourself too and thank you for the empathy. 

Kindest wishes

Debb

Thank you so much Mike. My brother hasn’t had a stem cell transplant so I’m not sure I should post anything in that group, but I will add a post to the HCL etc group, which I’ve yet to do. My brother is feeling very despondent about his level of care unfortunately, as he thinks his reaction should’ve been spotted sooner, as he’s had several doses of the antibiotic which caused it, I believe at least a couple of intravenous bags after the rash first appeared. He is great distress with it, though the haematologist said it should clear up over the next two weeks or so. I think they are going to give him some hydrocortisol (?) to try to reduce the effects. Anyway, my brother and mum are both at the very end of their tether due to extreme exhaustion I think. Thank you again for your kindness and empathy, and for what you say about the care you’ve received in the past, even over weekends. I’m so grateful for your support.

kindest wishes

Debbi

Hi Debbi, yes got that one wrong but it does show there are other treatments out there - sorry for that mistake....... must be the paint I am using in the kitchen lol.

Temeber to post on the HCL group as well as you may pick up some of these folks, I do hang out there to keep things ticking over.

Do you mean Hydrocortisone Cream?....... as I had a Skin Lymphoma this was part of my daily life for over 16 years of my 20 year journey........ just make sure he washes his hands after using it as it’s strong stuff but should kick the reaction back

((hugs))

Update. - sorry for not updating sooner but I’ve been at the hospital with my brother nearly all the time. I’ve added the following post to some of the other relevant groups

Advice on care tips - my brother is in hospital after first chemo with severe infection, he’s really suffering. He wanted me to ask for care tips from anyone who’s been in a similar situation

Dear all,

My brother was diagnosed with HCL under a month ago. He had 5 days of cladribine starting on 4 November for 5 consecutive days, in the early hours of 12 November he developed a temperature, and was told to go to A&E. He was admitted on Tuesday 12th, and has been in a side/isolation room on the acute medical unit ever since (I’m writing this at 8.30pm on Monday 18 November). He still has a fever, and developed a severe whole body rash in response to one of the antibiotics they started him on. They are now onto his fourth antibiotic as none so far have been able to improve his condition/treat whatever infection he has. The rash he has might be Red Man Syndrome as one of the drugs was Vancomycin. He is really suffering. He’s also been very paranoid, had swelling of limbs, temperature of over 40, vomiting, hallucinations etc) Does anyone have any advice, suggestions, tips for him? The medical care on this particular ward is extremely variable due to that it’s an acute care ward e.g we haven’t seen the same doctor, consultant, nurse or care assistant twice. 

Myself and my 85 year old mother have stayed with him round the clock (taking turns). We are all in quite a state, and would appreciate any advice whatsoever.

Thank you so much. 

Debbi

Debbi F

Dear Debbi, I’m sorry to hear your brother is still so unwell. I can relate to what you say about not seeing the same person twice, I have never been on the haematology ward during my illness, in my hospital the bed space is very limited. It sounds as though all the right things are being done but I’m sure it’s unbelievably stressful for you all. I see you have joined some appropriate groups and I’m sure you will get help and reassurance from people who have been through similar experiences with their family members. I will continue to follow your progress and wish you all well.

Hi Debbie, sorry for not getting back to you sooner.

From my many experiences with bad infections and all the issues he is facing at the moment...... there actually is not a lot you can do apart from hold on and look for improvement.

Yes, not a great answer and not very helpful but there is nothing much more than be around when he is awake as this is the biggest thing that can help ((hugs))

hi

how's he doing ?  

how is he being kept hydrated?

Carolyn

xx

Dear Jane, 

Thank you for your continued support. It's been so helpful to see your messages, as it's so easy to feel terribly alone in all this. My brother seems to have finally turned a corner, and his temperature etc has come back down. Since getting over my cough I've spent as much time as possible with him, and have slept on a trolley in his room on several nights. I'm at home tonight, but my mum is with him. It took 4 lots of antibiotics for him to respond to treatment. He's now been in hospital for over a week. Last night at about 1am they moved him to the vascular and urology ward, where I think they try to send patients with blood cancers. Anyway, I will keep you posted on what happens. Take care of you. 

Kindest wishes

Debbi 

Dear Mike / Thehighlander 

Thank you so much for your message of support. My brother does seem to be getting better at last, though I'm not taking anything for granted yet. I'm still learning about his condition, but it does seem that he's had neutropenic sepsis. They will be doing more blood tests tomorrow and there's some hope that he may be discharged before the end of the week. Unfortunately he's seems very low, which of course is absolutely understandable, he's had a lot to come to terms with in a very short space of time - given that his diagnosis was only about a month ago. In fact, I think he was still in denial up until the last few days. Do you have any advice about resources I could access to help combat his low mood? I'm not just thinking of now, but over the coming weeks and months? I'm a lifelong depressive, so I'm used to examining my feelings (that's a very short version of a long, long story), but my brother is the absolute opposite of me, and has never really had to cope with something as devastating as the situation he finds himself in now. I know this kind of self-knowledge is hard-won, but I read your personal blog about your journey with your illness, and I was so struck by the attitude you have taken. Any and all advice would be very gratefully received. Thank you so much.

Kindest wishes

Debbi 

Hi Debbi

So glad your brother has turned that corner of fighting that infection. Our son came out of hospital today after his high temperature/infection .  He was quite similar to your brother it took a while to find the correct antibiotics for him. His infection was in the PICC line. 

We find treating our son normal helps.  Go out for a little walk here and there, talk about anything other than the unfortunate circumstances we are in.  We encourage him to make us a cup of tea etc little things.   We have bought a 7  day pill box and put all his medication out ready for the week which enables us to keep his huge basket of tablets out of sight  I know its only a little thing but it makes the house look more of a home again and less like a pharmacy and not a constant reminder. 

Please stay in touch on here. 

Hayley x