Hello, I don't know if anyone can answer my question this late at night, but my brother is very ill with a severe infection following chemotherapy last week to treat very recently diagnosed Hairy Cell Leukemia. I'm absolutely desperate to be by his side supporting him, but I've got a very residual cough, and don't want to run the risk of infecting him. Please can anyone give me any advice? Thank you so much, I really am feeling so very desperate. My mum is with him, and has said that I should remain ready to leave for the hospital tonight, in case he gets any worse - he's not been responding to the antibiotics so far. Is there anything I can do (facemasks etc) that would make it better? I'd be so grateful for any advice at all. My brother and I are very, very close, and my mother is very elderly. She's likely to stay with him all night tonight.
Thank you so much
Debbi
Hi Hayley / Cyprusfan
I'm so glad to hear that your son is out of danger, and such great news that you've got him home from hospital! I'm not sure what you mean by PICC line, but I'll look it up.
I'm sure you're right about treating him as normal. I'll be doing my level best to do the same with my brother. We have a very jokey, bantering, yet loving relationship, and I will continue to do what I can to make him smile and laugh. I've already been thinking about a pill box, though my brother needs to take his medication at specific times throughout the day. Anyway, I'm sure I'll figure something out.
Thank you so much for your kind words, they really do mean so much, and I'm glad to hear that you've got your son home.
I'll definitely stay in touch.
Kindest wishes
Debbi
Hi Debbi
The PICC Line enables nicholas to have all his treatment via it including blood transfusions/platelets rather than keep on replacing a canula on back of the hand all the time. It is situated on his upper arm and there is a tube that travels into his chest via a vein.
Tablet box we have states on it morning, noon, evening and bed. You can also take out a days supply in a strip. I bought it from Amazon.
I am not an expert in all this but I think positive mental attitude goes a long way. I encourage Nicholas to get dressed in day clothes and even if he feels quite fatigued to come out with the dog with us even if he wants to go and sit in the car.
If you had told me I would be on these forums pre 23rd August I would have said "no way"!!
Hayley
Dear Debbi, it’s so good to hear that things seem to be on the up, you must be relieved but exhausted. I noticed you mentioned your brothers mood is very low, I think as a general rule men find it hard to deal with the overwhelming emotions a diagnosis like this can generate, they sometimes react in ways that to us might seem counterintuitive. He will need time to process what has happened to him and he has to adjust to his new normal. The positive news about hairy cell leukemia is that it is very treatable and has good outcomes even though right now your brother is having a rough time. When he is discharged it will be important to give him some head space and try to create a calm environment so he can decompress after being in a the very intense environment of a hospital. As a family you are all going though a very stressful time but things will improve once he is back home.
Hi Debbi , sorry for not getting back to you but was under pressure to get the new kitchen finished...... all done - and relax.
First, good to hear that your brother is making positive progress, I had sepsis a few times and it took my team a while to get on top of it first time round but we were better prepared the next time it showed its ugly head.
This is all hard going for him, being in hospital for a long period of time can get you down, but once he is out and in his own bed his eyes will start to focus on moving forward.
One of the best resources is talking with people who have the 'T' shirt and have walked the walk......... let him see some of our profiles, let him see the posts that are coming to support him and the family......... it make this all real and highlights that this journey can be completed positively.
You could get him to join the Community or just give him your phone/computer and let him post some questions and we will walk this with him.
If you have looked at my profile then you will know that a blood cancer journey has two battles.
The first is the physical battle - this is mostly up to his team but he also has a part to play in it....... Fatigue needs to be overcome and keeping some activity going will help lots..... this sign is up around my local hospital and it is so true.
The second battle is the 'battle between the ears'.......wining this part of the marathon is so important as you have to deal with the lows...... and there will be lots of lows..... but also higher, higher when the journey starts to progress and miles stones are achieved.
My illness DID NOT define us - our Strength and Courage did.
((hugs))
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