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
Dear Debbi, the most sensible thing to do is to ring your brothers ward and ask the nurses on duty if it is sensible for you to be visiting your brother at this time. However there is no reason why you can not be at he hospital to support your mother, even though you may not be able to have direct contact with your brother. I am sorry to hear your brother is feeling so ill, I have a type of leukemia which was diagnosed 17 months ago, so don’t give up hope, the doctors will be doing everything they can to get the infection under control and it’s something they are used to managing in blood cancer patients.
Thank you so much for taking the time to reply to me tonight. I'm beside myself with worry. I have tried speaking to the nurses on duty, I spoke to one a short time ago, and when I explained she said it would be best for me not to come, at least at the moment. I will try again when the day staff are on tomorrow morning - as long as I'm not summoned to the hospital in the meantime. i also need my brother/mum to give me confidential access via the phone so the staff are able to tell me what's going on. It's too late tonight for all that. He was doing OK, but his temperature went over 40 at around 10pm (I think), which they weren't expecting I think. Anyway, I'm going to have to sit out the night. I am in touch with my mum and brother by phone, but obviously don't want to disturb them when they are resting, which they are doing as much as possible, so I'm just sat here worrying and waiting. My poor old mum is 85 (and a former nurse) so I really want to do something to help, particularly as she's spending the night beside him in a chair.
I am so sorry to hear of your illness, but very glad to hear that you seem to be managing things 17 months on. I know the doctors know what they're doing, but am just anxious that things don't seem to be working - the antibiotics he was given have given him a rash, and his temperature continues to get worse. However, thank you for the reassurance, I can't tell you how much it means to hear from someone tonight. Thank you again, and please take care of yourself.
Dear Debbi, you have done all the right things, your sense of powerless is totally understandable, although it all seems very dramatic I know from many patients at my clinic that have been through similar experiences that the doctors will leave no stone unturned to get things under control and they have many things in their armoury to achieve this. Try to get some sleep you need to take of yourself so you can support your mum and brother. Let me know how things progress, and I will keeping you in my thoughts.
Bless you for those kind thoughts and words. I will do as you say, and I will let you know how things go. I'm going to go to bed now I guess, and try to just take things minute by minute. I do find your words very reassuring about the doctors, and thank you for acknowledging my feelings of powerlessness, it's so awful to not be able to help them, or be there with them.
Thank you again
Hi DebbiF and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your brother.
The blood cancer world can bring a lot of stress, confusion and questions but joining the Community will help as you can talking with people who are on the same journey, this can help a lot.
I have lived with my rare type of NHL blood cancer for over 20 years now, so it’s had me in hospital many many times and yes, with temperatures over 40 degrees.
Some times it takes little trial and error to find the best antibiotic to hit an infection, let’s look for his team to find a positive way forward and well done your mum sticking this out.
My wife and I were very mindful about taking infections into the house but more importantly the hospital as not only this effects your brother but all the other folks in the ward.
Phone the ward once the day team are in as you will get a different view and a better understanding how things are going.
We do have a CLL, SLL, HCL group, it can be slow but there are folks post who have HCL, this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
Just follow the link above, hitting ‘Join the Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.
As I was the person with the cancer my experience of supporting someone is very limited, although my wife has been amazing over my 20 years. You may also find ourCareers Only and Friends and Family groups to be good places where you can connect with others support family through their cancer journey but more importantly the carers care for each other.
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hopefully the antibiotics will start to kick in and things will improve.
I had leukaemia (ALL) and had sepsis following a stem cell transplant. My temperature was very high and for 48 hours plus my condition didn’t improve...during that time I couldn’t tell you who visited if I am honest as I just slept! . but slowly and surely the IV antibiotics did what they needed to do and a couple of days after that I was in. A much better place.
i can understand that you want to be with your brother but if you have a cold then better to err on the side of caution and follow the advice of the staff. Hopefully things will be looking a bit better this morning and you can chat to the day team for an update and advice.
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You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
Thank you so much for your very kind reply. I can't tell you how much I appreciated reading your words early this morning. I've spoken to my brother this morning - and he's hanging on in there - but his temperature is still going up over 40 degrees, and he's obviously in a lot of distress. I think it gave us both comfort when I read your reply and the others I've received, out to him over the phone this morning. I really value your positivity about what his team can achieve for him, and am hoping for the best.
Thank you also for the links you shared in your message - all of which I will investigate later. I'm so sorry that you've had to suffer for so long in the same way as my brother is doing now.
I'm truly, truly grateful for your very kind message.
Thank you so much for your very kind reply, and advice about what I should do about being with my brother. I don't have a cold, but I'm still getting over a cough, which is why I've not seen my brother in person now for over 2 weeks. I'm much better, but still coughing occasionally. Obviously I don't want to do anything to jeopardise his situation, I will speak to the day staff today to find out what more. In the meantime, I've purchased him a WIFI device so that we can use FaceTime. It's just arrived so I'll be getting that sorted out today. At least that will give me something to do, as it's been so awful not being able to help at all.
Thank you again, and I'm so sorry you had to suffer in a similar way to my brother. Wishing you all the very best.
Virtual ((hugs)) coming your way Debbi.
I am not sure about Paul’s Stem Cell Transplant journey but on a number of occasions I was in complete isolation...... not even my wife was aloud in........ this will pass - hold on tight x
Thank you so much Mike. I am indeed holding on tight. I read your previous reply out over the phone to my brother this morning, I think it helped him to hear your kind and wise words too. I was able to do a few things for my mum today, and took some things up to the hospital, which made me feel like I was doing something to help at the very least, even if I couldn't see my brother. Thank you again for your very kind messages, I'm truly grateful. X
How is your brother doing now. I can empathise my 25 year old son went in last night temperature of 38.3 then it dropped to 38.1. Weht back earlier. He is on antibiotics as well.
It's such a very stressful time
All the best
Hi Hayley Cyprusfan I was having a look at your posts in the Cares Only Group (I am not allowed to post in there as I was the one with the cancer) and I see your son is also on a Stem Cell Transplant journey.
I help out in our dedicated Stem Cell Transplant Forum (SCT) where many folks who are getting ready, going through or have come out the other end of the SCT rilkercidtet hang out and support each other.
I have had two Allo SCT with cells from my drover and eventually all command good. This treatment can be rather different from many of the treatments folks with cancer go through, not only is it challenging for the patient but also for all those looking on as my long suffering wife can testify to.
Why not come join the SCT group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
Just follow the link above, hitting ‘Join the Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your own Discussion and introduce yourself to the group.
When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names....... Thehighlander
Ley is walk the SCT journey with you - I will keep an eye open for you.
Mike thank you. I will edit profile and go on link.
Going to be so emotional this Christmas first tune 4 of us won't be home together. Struggling with that
Thank you so much for your very kind message. My brother is hanging in there. He's still in a bad way though. He had an allergic reaction to the next lot of antibiotics they gave him, and came out in an awful rash. His hands were also swelling up. They've stopped that now and are giving him lots of saline. I spoke to him at 3am and again at around 8am.
I'm so sorry to hear about your son, I really appreciate how stressful and worrying this time is for you both. My old mother (aged 85, and a former nurse) has been at my brother's side since early Wednesday morning (including the last two nights). I'm so frustrated that I can't relieve her, but I don't think she'd go home even if I could.
Anyway, I will keep you posed on how my brother does. Please take care of yourself too, and thank goodness for wonderful Mike in the community here, who's reached out to you with further support.
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