My brother was diagnosed with HCL under a month ago. He had 5 days of cladrabine 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’s 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.
What an awful time
The only thing I can think of is to ask for a meeting with the ward doctors and maybe another with his oncologist. I'm sure others on this forum will have some brilliant ideas. You can always phone Macmillan for support and general information, they have been very helpful to me. I'm sure your brother appreciates you constant care, try and look after yourselves as well. Thinking of you, Pamxx
Hi Pam / Needing friends
Thank you so much for your advice. I have already phoned Macmillan, and just as you suggested, they were absolutely brilliant. Thankfully my brother does seem to have turned a corner now, though we're taking nothing for granted just yet. Thank you again so much for taking the time to reply.
Thank you so much for your reply. It was really fantastic to have the reassurance that we are doing all that we can. You are so right about pain relief being overlooked at shift changeover, or in my brother's case, certainly being very overdue. We have been doing all the other things you mention. Myself or my mum have been at my brother's side at all times (day and night) throughout this period). Like you say, it is extremely hard to witness. He does seem to have turned a corner over the past couple of days though. I so hope that we're able to get him home soon. Thank you again for taking the time to send me a reply.
Hi Debbie. You have probably heard most of this before. Get hold of his own Oncologist by phoning his Secretary and request that he visits. Also find the Macmillan Nurses who will be based there at the hospital. These two people will be able to make sure he gets the right treatment. The Chemo would have stripped his own defense system resulting in his infection and the hospital need to boost this with a Nutrafil injection.
The problem with ward doctors is that they are Newly Qualified.
Most of the Hallucinations , sweating vomiting etc is down to the temperature of his body. Ask them for a fan to help cool him and if he can drink Iced water. My wife was like this back in April after her first chemo for Lung Cancer and it was horrendous to watch. I pray for you all that he gets through okay.
Hi Billythedog, thank you so much for your message and for getting back to me. I'm so exhausted that I haven't had the chance to reply until now. I understand what you mean about the newly qualified doctors on the ward. Undoubtedly they mean well, but we only saw the consultant haematologist (the top guy I think) for the first time on Monday, nearly two weeks after my brother was admitted. Thank you for all your advice, and for your kind thoughts and words. It has been horrendous to watch and I'm so sorry to hear that you've been through the same thing also.
Debbi take each day as it comes. Things WILL get better.
God Bless All
I have a whole page of tips and hints - as an outsider - friend and carer -
Before you go to hospital.
First thing to consider – make sure you have your house organised for when you come back – maybe set up a bed downstairs. Easier for someone bringing you cups of tea, food etc and making sure you are OK. You will not feel so isolated either.
Get those logs organised and delegate all the things you normally take care of.
Make best friends with the local district nurse and make sure you have their support if required – they know everything but are very hard pressed to give actual help. They can rustle up all sorts of helpful and useful medical equipment but they don’t seem to visit and change dressings any more. (Might be different in Northumberland and I know they have that new health centre in Rothbury so they may be more supportive)
Off to hospital
Lots of waiting around so magazines/music with headphones/old BA newsletters are good to have
I find that the nurses will treat you but not nurse you (in the old fashioned way of making sure you are comfortable, plumping up pillows, etc- they are far too busy doing paperwork) except in a recovery ward and you may only be there for a few hours or overnight.
Once on a normal ward you will have to fend for yourself so a good neck pillow is comfortable, wet wipes to cool yourself down and clean up. paper hankies. toothbrush and toothpaste, phone and charger, Juice, bottled water, sweets to suck, snacks, pen, pencil, notebook, a grabber is handy as you can find everything is put just out of your reach.
Visiting hours can be endless so don’t let well meaning visitors exhaust you.
Make sure everything is explained to you properly – medical staff love jargon. Ask questions until you are satisfied – it’s good practice for them to have to explain things.
Read all the leaflets they have given you at the hospital but err on the side of caution – when discharged you may not be able to do as much as they have told you – get Sue to bring strong daughter or son in law with her to help you into the car and out again once home. Little steps can seem like mountains.
Back home again
Useful stuff to have around you are books and magazines – a grabber for reaching stuff you can’t reach – radio handy - lap top or computer - somewhere for juice and snacks – more wet wipes and paper hankies
Once again – keep well meaning visitors at bay.
You will have all sorts of medication and instructions – keep a diary so you can see how quickly you ease off painkillers and other non essential meds. Note your progress in recovery so you can look back and see how far you have come every day then every week.
Once you are starting to get bored you are on the mend!
I knew nothing of cancer until hubby then a number of close friends succumbed - all still on the go but it has been tough and I put together advice gleaned from all their situations which I have passed on to more people.
Add anything else you think of please on this forum.
I found the diary the most helpful.
How is your brother Debbie
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