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Hi Hayley, it will be an honour to walking this walk with you.
Christmas?....... following my second SCT on 21 October 2015 I was at home but have no recollection of the first few months post SCT, I can only go on what my wife tells me as during this time has my head was just mince!!!!
A FB memory came up on one of my daughters feeds this morning - the picture is of me sitting with my oldest granddaughter kneeling on the floor watching me open my 60th dirthday cards and gifts, I had a big smile on my face ..... but 4 years on I still have no real recollection of this.
But I take great comfort that we have had three Christmas, birthdays, lots of happy times......... and life. As without SCT that would not have been the case.
Keep your eyes fixed on the greater good in all this.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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Dear Debbi, have read your latest update and just wanted to let you know I am thinking of you and your family at this difficult time. Hang on in there, these things often take time for the doctors to get sorted out but as you can see from the wonderful responses from knowledgeable forum members, where there’s a will there a way. Hopefully you will soon be able to visit your brother but in the meantime you must take good care of yourself.
I am sure your brother will soon pick up. It seems to be with a lot of infections trial and error as to which meds will work the best. In the meantime it's an awful waiting game for both patient and relative. It's the feeling that we can't do anything to help isn't it?
If someone had said to me pre 23rd August I would be in this forum I would have thought they had hole in the head. Life can be shit.
Yes thank God for Mike I will look at what he has advised later. I can't always take it all in.
Anytime you want to chat on here. I am here for you
I was wondering if you could give me some advice? My brother is reacting very badly to all the different antibiotics they’re giving him. He has a terrible rash (so bad that some of the consultants have come to take a look just for their info I think). His hands are also swelling up. He’s seen yet another consultant on the rounds this morning, who was a bit dismissive apparently. He said that Andrew is to continue with one of the antibiotics he’s reacting against, and of course today is Friday, which means Andrew won’t see another consultant till Monday, and will be continuing with antibiotics that are causing him great distress. I’m sure the doctors know what they’re doing, but he’s still in a side room on the Acute Medical Unit, pending a bed becoming available on the Haematology ward.
So my question is, are there any groups I should join to ask if there’s anything we can do? I appreciate there may not be, but I wanted to ask. I have joined the groups you suggested but I was so exhausted last night, that I didn’t put any further messages up (my brother has been calling me throughout the night too). Andrew suffers with lots of allergies so it’s unsurprising that he’s reacting so badly.
Thank you so much for all your advice and support.
Sorry to jump in. It is a identical situation we are in. Nicholas is in a side room on acute medical. They don't seem to have the knowledge that a haemotology unit has. We are waiting as well.
Same boat weekend is coming and we won't get much luck then
Hi Debbie and Hayley, first I would strongly recommended you both start your own discussion in the Stem Cell Transplant Forum as this will open up your concerns to more folks who have the ‘T’ shirt and done it and it’s not just me posting answers.
Now your question - reactions to antibiotics can indeed happen and some time (from my experience) you just have to knuckle down and get through it. I am allergic to Penicillin so this make these time hard.
“he’s still in a side room on the Acute Medical Unit, pending a bed becoming available on the Haematology ward”
Good that he is in Acute Medical - a safe place to be and in his own room keeps him away from the birds of visitors who don’t take car and come visit folks full of bugs........ Yes, best to be in the Heamatology Unit but again from my experience, when I was in hospital with many infections and was in the same position as Andrew the duty Haematologist used to come in past and see me on the weekend, and during the weekend and at night there will be an on call Haematologist if required.
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.
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.
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
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
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.
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))
how's he doing ?
how is he being kept hydrated?
real life success stories to remind you that people do survive breast cancer
Dr Peter Harvey
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.
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.
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