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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Avoiding infection - how to tell people not to see you if they're ill?

Hi everyone,

A few people have been talking to us this week about the challenges of avoiding viruses and infections post-transplant. One of the challenges is that friends and family don't always understand how important it is not to see you if they're ill.

What are your top tips on explaining to people that they can't come and see you if they're ill?

Amy

Comments

  • In my case I think those close to me did understand the importance of not seeing me when they were ill because of the risk of infection to me. Living in the east midlands with most of my family in Yorkshire, they were keen to come and see me if they could, particularly my parents. But I can certainly recall times when they postponed a visit due to one of them having a sniffle or cough that they didn't want to pass on.

    I found that when you explained to people who were not so close to you what you had been through and why you were being cautious to avoid infection, they were all very understanding.

    My only frustration is that my boys never seemed to pick up on the need for strict hygeine and whilst they may have washed their hands and used alcohol gel on visits to the hospital, they have not been as fastidious at home. Washing their hands after they've been playing out, or with the dog, and even before mealtimes is something that doesn't happen unless me or mummy prompts them. I guess boys will be boys but I had hoped my episode might have taught them something about cleanliness.
  • We found the best thing was being blunt to family and friends and saying no visits if anybody had a sniffle or cough or cold. If they were close enough to have the full story then we didn't have any real issues.
    However all visitors no matter how close would not get past my wife unless they used the hand gel which she kept at the front and back door. When they had gone she would wipe down every door handle, toilet flush handle and every other surface, it became a habit for her and it worked. She is still vigilant 2 years on.

    It was hard to explain to my 2 youngest grandchildren not to get too close, hugs and kisses were out for months, any sign of a sniffle and they were kept in another room and they would be taken outside to wave to me through a patio door. They didn't get upset, their parents explained the reasons to them in the simplest terms.

    I remember the day I was discharged, I went straight to bed, my first visitor was a nephew , a tall, fit and lean firefighter who had just finished a shift, my wife wouldn't let him over the bedroom threshold and he had to talk to me whilst sitting on the landing. He accepted being told what he could do as did all the others once they realised the risks.

    Once visitors were told the reasons, they became fascinated with the story and the Anthony Nolan connection and I know the firefighter's 2 sons have joined the Anthony Nolan register as a result of this.

    Peter
  • I just told people!
    They knew I was ill, they knew my immune system was compromised so they accepted it.
    I didn't have any family or friends who had sniffles/colds/illnesses even want to come and see me, they knew to stay away.

    I also told my brother I was unable to see my niece and nephew for 100 days (this upset me). We stuck to it vigilantly.

    Wouldn't it be a shame to go through all the rigours of a transplant and then be compromised by something that should be avoided. Just tell people straight, it is the best way.

    Interestingly, on fathers day we were due to go out for a family meal with my parents and brother and his family. In the morning my sister in law rang to say that they had seen a child the day before who had broken out with chicken pox that same day, were we all ok to still go out for a meal? I said no! It was justified because 14 days later my nephew also got chicken pox. My point here is that because I have been very clear about the risk of infection to me, all my friends and family know and they care! They do not want to be the cause of me getting ill.

    It really is best to be open and up front, but in a kind, caring way!
  • Just tell them! Be very clear about why. No one will take offence, if anything they will start policing others
  • I start all interactions with people I haven't seen for a while with an "are you well?" from a distance! My unerring experience is that once people understand that I am serious and that the health threat to me is real they self-police.
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