Wife just been diagnosis with AML...please help me!

Hello everyone

I really need some advice.

My wife turned 40 this year which was bad enough for her (she hates birthdays), but to say this year has been a shocker is a massive understatement.

She has had some heavy vaginal bleeding for a while, since January actually, we were advised it is just perimenapause but after some heavy episodes we got into A&E in May then into the system and had bloods done showing no signs of abnormalities. Fast forward to last week, she developed an ear ache, went very weak and we assumed an ear infection. She hadn’t got any better, Sunday night we had the ambulance out as she had severe chest pains. Medics checked her out and all vitals looked fine but they said only way to check is to get bloods done.

Called GP yesterday morning, blood test at 2pm and about 5 missed calls at 6pm from the hospital telling her to come to the acute medical ward as bloods not right. Overnight stay then today down to royal hallamshire blood unit for bone marrow biopsy and pretty much confirmed she has AML and will need immediate chemotherapy.

So my wife is incredibly healthy, we have 2 kids 13 and 10 and I have no idea where to start or what to do. I am sure the professionals will tell us but I honestly don’t know where to start as I have to keep positive.

It’s literally come out of nowhere and we are both so confused and worried what the outlook is, what happens next and is this is common or not.

Thanks
James

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Good morning @Jdl003 and welcome to the forum. As I read that it reminded me of when I was diagnosed with lymphoma at 41 with two children, ages 7 and 11. I can totally understand every bit of what you both must be going through and I wish I could just give you both a huge hug.
It’s hard enough dealing with your own emotions but when there are children involved, my goodness, it tough, so tough.
Everything has happened so quickly and your thoughts and emotions must be all over the place.
First off all, I’d strongly recommend giving the support line a call (Blood cancer information and support by phone and email | Blood Cancer UK), and I know from personal experience that McMillan are also great on advising on how to talk to children etc (Macmillan Support Line - Macmillan Cancer Support)
You should be given a assigned a clinical nurse specialist. I can imagine you don’t even know what questions you want to ask at the moment and you just need to get through all the tests. However, make sure you get their contact details for when you need them.
I feel like I’ve given lots of practical advice but also just want to say that everything you are feeling is so normal. My husband just didn’t know what to do - he was my strength but needed support as well. Have you got a good support system around for you, your wife, and children.
This is useful information on AML https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/acute-myeloid-leukaemia/ and may help you think about the questions you want to ask. I’m sure your wife’s medical team will go through everything with you. The waiting for results is just the worst thing.
Please please please give the support line a ring. They will be able to offer you so much and I think it’s good to talk things through sometimes, especially with regards to the children. This was where I needed most of my support. We are here to support both you and your wife through the next let of your journey. For the next couple of days just take care and please keep us updated on how things are - if you feel up to it off course. Sending you both lots of love

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Hi @Jdl003 and I am so glad that you have found us.
Firstly both you and your wife must be in complete shock and fear, you have received shattering news and you are now on this whirlwind in what feels like a parallel universe.
I was diagnosed at 53yrs old again via a gynaecological route. Again the healthiest person in the world, 30 yrs at work without a day off sick.
@Nichola75 has given you great advice.
Perhaps sit down together, talk about how you are both feeling and thinking, then she or both of you write down a list of questions, fears, thoughts, practicalities etc, you would like to the medical team.
My husband and I did not talk enough or consider each others feelings.
A handy hint from me is to keep a diary of events, a list of family medical history, a list of her medical history, a list medications etc. It saves trying to remember things later on. Then keep it in a folder.
Shock takes an long time to calm down and as I read your post those feeling came whizzing back to me and I was diagnosed 17 yrs ago.
I will not say more now otherwise you will have brain overload.
We are all here to support you and the support line number above I have found is brilliant.
Look after yourselves and keep posting.

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Thank you so much for that, I will certainly look into that and call those numbers. We are here at the hospital now and she is having loads of blood and skin tests to help determine genetic make up and type of AML but the staff have been nothing short of superheroes.

We are both so upset, I’m having to be strong and she is having to be very brave, I am in awe of her even more now.

It’s a journey and I think we have convinced ourselves we need to take a day at a time but inevitably your mind thinks of scenarios that may never happen.

The chemotherapy starts tomorrow with some mild tablets before they put the line in and it starts properly

She is really worried about how agressive it is bit I’ve told her to not second guess the resuyand even if it is there are options

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Hi there, unfortunately it sounds very similar to our situation. I was turning 40 as my husband was diagnosed with ALL & AML his gp suspected a hernia but his bloods showed a low white blood count. When he could take no more I took him into A&E where he was seen to within half an hour and then didn’t come home for 6 weeks. He had extremely good care but a very intense treatment plan. With a few more stays here and there in hospital. Most of the focus was on him of course and I have two children too, one was moving up from primary at the time of his SCT. I would suggest accepting any help offered reaching out to friends and family even when you don’t want to. Being kind to yourself and your children. Having lots of treats and keeping them informed of what you think they can take and want to know. My son liked to know the blood cell counts. And tell the school so they can support you all too. Take each day as it comes as it will be a rollercoaster. Good luck to you all. And do take care of you. X

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I think a day at a time is all you can do. Of course your mind will go to the worse case scenario. Every now and then and that’s so completely normal. You sound like a really strong family and very lucky to have each other.
Please keep us updated. Thinking off you both and sending lots of love

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I can’t add anything, so I will send huge hugs and best wishes to all your family @Jdl003 x

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She is really very weak, sickness and nauseous a lot. Sternum and back pains. Started chemotherapy yesterday with mild tablets so I think it’s just her body getting used to the medication. She is having the line inserted tomorrow so I guess it moved out of first gear now.

I’ve brought in a quilt and pillows from home which has helped her to sleep a bit but she is really struggling but doing amazing to keep it together

Friends and family have been incredible

It’s just the worst seeing such a strong woman wife and mummy being so poorly and so fast.

I am in awe of her x

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Yes @Jdl003 it must be horrible and the worst possible thing to see such a strong woman wife and mummy being so poorly and so fast.
You are being absolutely incredible yourself, you are keeping all the plates spinning behind the scenes.
I am in awe of you and perhaps the important thing now is while your wife is being looked after in hospital that you and your children really look after yourselves and, now this might sound weird, but even have the odd treat.
Please keep posting.

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As I read that it bought a tear to my eye. You are both amazing and I’m so glad you have the strength of family and friends when you need it most. Lean on them and let them help. How are the children doing? X

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i value your comments so much and they help me. i think she is confused, anxious, scared, jumping to conclusions and just so tired trying to process it all. AML happens so fast, and i keep telling myself we have caught it early. bank holiday monday we did at 10k walk at Malham Cove, only 2 weeks ago we went to Clumber Park for a big walk, she was fine

these tiredness symptoms only started a week ago, so surely it has to be a positive that we caught it fast so we can blast it out of her. still awaiting the results though.

tomorrow she has the line inserted, i suspect this will be challenging, she will get ill very fast. we all need to keep her motivated to battle this horrible thing.

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Like you said - a day at a time. You’ll all be in my thoughts and when/if you feel up to it just keep us updated x

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Hi @Jdl003, you show so well that it is not just your wife going through all this it is definitely you as well, so please do look after yourself as well otherwise you will be unable to support her and deal with practicalities and keep all those plates spinning.
As @Nichola75, just take it a day at a time otherwise you will exhaust yourself, emotionally, physically and practically.

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I’m really sorry to hear about your wife. I had a similar shock 18 months ago when I was diagnosed with AML. I am older - 63 at diagnosis - but had never been seriously ill and similarly been for long walks not long before. I agree with everything that’s been said about trying to be open with each other. I think I underestimated how scared my family were. A few practical thoughts that might help:
Keep a note of things you want to ask the consultant - I kept a running list on my phone so I didn’t have to rely on my memory
After my first month of treatment I was allowed to have “backpack” Chemo which made a huge difference as I didn’t have to stay in after the first 6 weeks, although I did have to go in most days. Worth asking if your hospital does this.
Everyone has different responses to Chemo, but it’s never fun. It affects your skin so E45 cream became a lifesaver.
My consultant told me to put my life in hold for 6 months and despite having a very busy job I decided to listen and focus on my recovery. As a result I was able to go back after those 6 months and am now working full time again, but I’m glad I didn’t try and soldier on. Difficult when you have small kids but all I’d say is if people offer help, take it!
Your wife will lose her hair so it’s worth buying some cotton caps from Ebay/Amazon so she has them before it happens. I didn’t and my husband had to go hunting for one at short notice.
Take it day by day and don’t set your expectations of yourselves too high. My consultant told me that my AML was curable and I focussed on that. There will be days when your wife will struggle to walk across a room but it’s all in a good cause and it DOES pass.
There are some great resources here and people are always happy to help, you’ve made a great first step by getting in touch.

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Hi @Roskie a great big welcome to our forum and I am so sorry that you did not find us when you were diagnosed or having treatment.
@Jdl003, such good advice about accepting all help that is offered and, also what I find so difficult is, making sure that you ask for help as well.
What I was impressed at @Roskie is that the consultant told you to put your life on hold for 6 mths and that you did. Like you I have always been a ‘soldering on girl’ myself and I know that I am my own worst enemy.
During treatment your body goes through so much emotionally, medically, physically and practically that it takes a very long time to replenish your batteries. I know with a family you can only do your best at that.
Take care and please keep posting as I would like to hear more about you.

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Awesome advice guys, thanks so much…She is a high school English teacher and has a very stressful job

She today said she won’t be returning to teaching and if she does it will be part time

I took this as a massive positive as she sees there is an end and also sees that there are more important things in life than work.

She will do this. I just have to help her when she is down and vice versa. She gets upset when we talk about the kids but I keep sending her WhatsApp videos and pictures of our pets and will continue to do so so she doesn’t detach

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Hi @Roskie and welcome. That is such a helpful post. Like @Erica said, I think it’s really important that you took the time to recover - it’s so important. Too many off us just soldier on and on the long run it can have a really negative impact. It’s great to hear things are better for you now. How have you been keeping?

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Found out a bit more today which was good. She was so worried about the sternum pain and vaginal bleeding and thought that was also different cancer, in her words ‘riddled’

She has a biopsy only last Friday at local hospital and they got results back today and said she doesn’t have cervical or womb cancer and the consultant was clear the pain in her chest, vaginal bleeding is all linked to the acute myeloid leukaemia. He was concerned it was very fast acting and targeting her liver, pancreas and cervical area but fundamentally it was linked to AML and not other cancer. He said if she had all of those she would be comatose. We took this as a good sign as the doctor said the chemotherapy will kill those bad cells causing those problems and was confident.

Therefore he pretty much said she had to start chemotherapy via PICC tonight which she did. Hard but first one proper done. I’m so proud of her. I was at home having a Chinese with the kids which seems absurd but what can we do? I think for the patients loneliness is probably the hardest.

He thinks she will need a transplant to get rid of it for good so they have started the process for a donor but as she is Caucasian the options are generally good.

We are all rooting for her and I know she will do it.

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Good morning @Jdl003. I can imagine that news bought you both some relief. Like you previously said, our mind goes to the worst case scenarios so to get some reassuring test results and information from the doctor was well needed!
I can imagine it was a strange feeling at home and didn’t feel quite right. My husband said the same following my initial operation and felt quite guilty taking the children out to eat and having movie nights etc. But like you said - what else can you do. Off course I was lonely but it made me feel so much better knowing the children were ok - with their dad who was taking amazing care off them and making the journey as easy for them as he could. We also had a great support network who supported him which was so important.
I hope the treatment continues to go ok. She is doing amazingly, as are you. You take care and thanks for updating us. You’ve been in my thoughts X

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Hi @Jdl003 thanks for updating us and I can feel in your post hat you and your wife are feeling more positive and relieved.
Your wife is being looked after in hospital, although naturally she will feel very lonely and scared at everything that is going on.
I was delighted to hear that you and the children were having a Chinese. As you say it might feel absurd, but it is looking after yourselves and spending some time together which is so important, as a family you are a team and it will actually give your wife some peace of mind too.
If you don’t mind I would be interested in knowing how old your children are and how you are telling them what is happening?

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