Husband has AML- advice with infection prevention

Hi, my husband is in intensive care with AMLand has just finished 5 days of chemo. He went into intensive care before he started chemo - it was because of infection and heart issues. He’s usually a fit active 61 year old- no illness symptoms before this except mild Covid in March. He’s doing ok thankfully, got through this first chemo which they were very concerned about with his heart. It had been a very shocking and anxious time . I’ve been self isolating as I’m terrified about even getting a cold and not being able to visit but now I’m hearing about more Covid cases. I test each day before seeing him.
On Sunday it’s my daughters wedding- I’m going to mask up , she wants me in the room while she gets ready etc. I am worried . I’ve got a hair appointment Friday which was booked before my hubby became ill. I’m thinking I should cancel the hair appointment. It’s so hard to know what to do. Any advice would help please :pray:

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Hi @Finnigan welcome to our forum and what a dilemma for you, you are in the middle.
I have heard about people contacting their hairdresser and explaining their situation and asking what precautions they might take. Then you can look at the pros and cons for you.
Perhaps an honest talk with your daughter, your husband and the hospital and some compromises can be come to.
It is such a very special day.
Before Covid we would never have thought about catching a cold at a wedding.
Please let us know what you decide and be kind to yourself

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Hi @Finnigan, welcome to the Forum and thank you for sharing this. I’m so sorry to hear your husband has been poorly and I do hope he recovers well after his chemotherapy, understandably this must have been such a worrying time for you. In case it is helpful for you to talk any of this through at all, you’d be very welcome to get in touch with our Support Team, on 0808 2080 888.

I do appreciate it’s a difficult decision that you’re making now, and you’re certainly not alone in this, which I’m sure you’ll see here. @Erica has given some great advice. Our webpages here may be a useful read for you as you navigate these decisions. We do also have information about covid treatments, just in case it’s useful for you to be aware of the process to be assessed for these.

Please do take care of yourself, and do reach out here for support. Best wishes, Tanya.

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Thankyou Erica and Tanya. I have telephoned the hairdressers - they were going to ring me back - I probably will cancel just Incase rather than me worrying. It’s nice to know that there is a group here I can contact for advice
X

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Hi @Finnigan. Off course, call on us whenever you need us.
It’s sounds as though it’s been a tough week, especially having to make all of these decisions around your daughters wedding. I think you need to do whatever you feel comfortable with. I’m sure those around you will understand.
Please let us know how you get on. Sending lots of love X

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Hi @Finnigan

It’s great that you’ve reached out here - it’s very supportive, and you’ll find so much useful info. I’m so sorry though that your husband has been diagnosed with Acute Myeloid Leukaemia. You must all be so scared. I was diagnosed with it nearly two years ago, aged 50 (I’m better now) so I can imagine the dreadful thoughts going through your minds, and the utter terror of covid whilst his immune system is not functioning well.

You must do what feels safe and right for you and your husband, and keep in mind the advice of his medical team. Whilst I was having chemo, I couldn’t have any visitors, because of covid. Covid is a milder illness now, but it could still be problematic for him during chemo. You’re very sensible to test every day, and presumably you wear a bit of PPE such as a mask, when you visit? I think it’s a good call too, to double-check safety precautions at the hairdresser’s. How will you handle mixing with guests at your daughter’s wedding? It’s so sad and unfortunate that your husband’s illness has coincided with what should be a joyous celebration in your daughter’s life. Would it be possible for him to watch the ceremony live online?

It’s fantastic your husband was so fit before the Acute Myeloid Leukaemia struck - that will stand him in good stead with the treatment. The fitter beforehand, the better.

You have so much on your plate right now -you must be feeling so stressed and worried. Please keep in touch here if you’d like, and do ask any questions you want to.

All the very best to you and your family. X

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Thankyou so much for your lovely message.
It’s wonderful to hear that you are better now. :blush:.
Did you have a bone marrow transplant?
To be in hospital during Covid and not having visitors must have been so very difficult.
I suppose now the problem is visitors could pose risks.
My husband Paul has got through the first round of chemo and is doing well after a worrying start. He is going to be moved back to haematology ward from intensive care tomorrow.
Masks are still worn for patient contact. I’m asking any visitors , which so far are myself and his sons and daughter to do a lateral flow test before they visit.
I’ve decided not to go to the hairdressers tomorrow. I will be wearing a mask at the wedding and generally be very careful.
Paul asked me to video the wedding and yes it’s a good idea for me to do a live video call of the ceremony. With it being Father’s Day on Sunday his 3 children are going to visit him during the day and attend the evening reception-their step sisters wedding.

Elise

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Thankyou Nichola, so nice to know there’s support out there
Elise

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Hi @Finnigan that sounds as if you have all made decisions that you are comfortable with.
A live video call sounds great.
Please do let us know how the whole wedding goes and what you are going to wear.
I will definitely be thinking of you all, wish you daughter and her partner every happiness from me.
Don’t forget that I expect Paul will want to see you in front of the camera as well as you being David Bailey.
Enjoy and we await hearing from you

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Hi @Finnigan

My husband is a Paul too. He was fantastic when I was ill, and I can tell you are doing an amazing job for your husband. Don’t forget to look after yourself too. I often think it’s harder for the spouse/partner, as they take on all the caring, and the relaying of updates to everyine else, plus keep the home running. So I hope you get to be still and quiet if ever you need to be.

Yes, I had two rounds of chemo (daunorubicin and cytarabin) and then another round of chemo preceding the stem cell transplant (a different chemo cocktail, the make up of which I can’t remember.) I had the Stem cell transplant because I had three genetic mutations that signified high risk of relapse without a Stem cell transplant - and here I am, feeling better than ever, 16 months since my discharge from the transplant hospital!

So there’s really plenty of hope to be had in these situations, @Finnigan - particularly if you’re fit before the Acute Myeloid Leukaemia strikes. It might cheer your husband to know that I’m able to do lots of high intensity exercise, and I’m just going back to work. I could have gone back much sooner, but unfortunately I had a mild but hard to shift infection for 5 months that prevented me from returning to the workplace sooner. But there CAN be life and normality after Acute Myeloid Leukaemia.

Sounds like you’re taking all the right precautions regarding covid. And that will get a bit easier as you get used to it.

I hope your family all have a fabulous day on your daughter’s wedding day, and that your husband enjoys it from afar. The circumstances might not be what you had hoped, but at least the wedding is happening and your husband is feeling well enough to enjoy the parts he can. That’s the main thing - that he is well (in the Acute Myeloid Leukaemia circumstsnces!) and that your dsughter has a beautiful day.

Good luck and have a wonderful time. X

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Dear @Finnigan, I am so sorry that Paul is so poorly. It sounds like you are dealing with everything remarkably well and maintaining your daughters wedding plans is very important for you all I am sure. Testing each day before visiting is wise and being mindful of any subtle symptoms. Videoing the special day will be great and a visit on the Sunday will give him a huge boost.
You’ve been given so much good advice here by the Forum members and Tanya, do keep posting and call the Support Line if you need to talk things through: How to contact Blood Cancer UK | Blood Cancer UK. King regards Gemma

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Hi @Finnigan - well done for posting and reaching out to this brilliant community. I was diagnosed with Acute Myeloid Leukaemia a few years ago and went through a similar treatment schedule that Paul is undergoing. It is tough, but very very worth it to come out the there end post-transplant with a brand new Bone marrow. Like you, and all other Chemo families, we worry constantly about bringing infection into the house - especially with COVID around. Our solution was to live a carefully balanced compromise. For me it was important to get out a bit when I was up to it and to feel that I was living a proper life - not being totally isolated, locked up in the house feeling safe but miserable. But we were always very careful when we went out - always wearing a mask, staying 2 metres away from people (eg in shops), and always being very careful to use hand sanitiser / hand washing before and after each contact / event. We also asked visitors to the house to test for COVID before arriving. It all really worked for us. Undoubtedly there is an element of luck involved, but we found that we could live a semi-normal life whilst at the same time staying safe. I also insisted that my amazing wife (who, like you took so much of the caring burden) took a few days occasionally to visit family and friends to allow her a little time off to decompress. Obviously, she was careful to avoid infections and COVID when away, and tested thoroughly before returning. I wish you strength and luck in these challenging times - and feel your concerns and impatience as you journey back towards a fully normalised family life. Normality will return - Paul is being fitted with a new battery which will power him into a bright future !! Bonne chance !

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Hi @Finnigan I’ve got a different type of blood cancer but cna understand the complications this has given you, especially around Covid. It sounds like you have got a sensible plan which will help you keep your husband safe and also enjoy the wedding as you should. I hope it all goes ok for you and that your daughter has a wonderful day. Let us know how you get on and hoping for a swift return to good health for your husband. Great to hear that he’s out of intensive care.

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Thankyou Quentin. So lovely to hear that you are Better now . I’ve read this to Paul and it will help him to keep positive on his journey. A long way to go yet .
I went to the wedding and was very cautious. It was a lovely day - really missed Paul :heart:
Elise

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Oh @Finnigan I was thinking of you all yesterday, thanks for posting and I am so, so glad that the wedding went well.
It must have been very difficult for you to relax and I bet you really missed Paul and I am expect he was really missed too.
I expect that he must have felt sad and frustrated to be stuck in hospital too.
Look after yourself now.

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Hi Finnigan, just saw your posts and thought I would join in to say I am thinking about you…My husband was diagnosed at the beginning of the year so we are six months down the line but Quentin sums it all up really. I was terrified for the first few months, and we did have a really bumpy road . I think you are dealing with the shock of the diagnosis as well as the chemo being quite brutal on somebody who is already ill. We are now on cycle 3 (out of 4) and its been a gradual journey and baby steps to have some sort of normal life and a social life. I do the same as you and Quentin with regards the testing. I am going away for a few days with a friend and there is a theatre visit involved so I am a wee bit nervous about that but will test every day. There is great support on here if you need any questions answered. This forum was a lifeline to me at the start as I have never felt so alone after the diagnosis. Onwards and upwards for your husband.

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Thanks @Catpat Quentin really does sum it up probably.
If you have a theatre book planned it just might be worth contacting the theatre in advance and see what they might say or do for you.
Enjoy you few days away you certainly deserve it, recharge your batteries and enjoy, spoil yourself and we await hearing about it.

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