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

Daughter is 13, son is 10

It’s hard as they know something isn’t right. Mummy isn’t here, WhatsApp calls and loads of friends randomly appearing.

I haven’t told them the exact condition yet but my friends came over last night, we were chatting about blood cancer and other cancers whilst watching TV with the kids and saying how cruel it is so I am gradually introducing the fact it is that

My son is easily distracted by football, friends and Xbox but he is an emotional lad so we have had a few cries together and I’ve told him he needs to be a tough one

Daughter has a great support network and she goes to the school my wife teaches at so many are looking out for her. She is into playing Zelda on the switch, sending her mum funny memes and she has a friend for a sleepover tonight.

Our friends and family have been nothing short of incredible and it’s really helping.

Downside of all this is I’m having to clean the house today.


Bit of an update

She started FLAG Ida chemotherapy on Saturday, so that’s a 5 day cocktail treatment which is incredibly intensive. Her liver readings were sky high on Friday so the Consultant wanted to start chemotherapy right away as was concerned the leukemia had infiltrated her liver which looked like it had

She is bossing it at the moment at 50% through. Incredibly tired and drowsy but not been sick or yet any other side effects, but it’s knocking her for six. She is eating ice lollies, yoghurt and has a fixation on fresh orange juice. Whatever helps her I guess.

We saw the Consultant today with an update. Her liver readings are heading down and to where they should be and also he was really pleased how she was taking it.

He also said some more good news that she was FLT3 negative (I thought he said FLIP3) but I think it was FLT3. He says this is a good sign that it is treatable.

We were both happy with this, clearly a long journey ahead but taking it day by day and this made us happy.

Ps, how many of us become traiee hematologists during this process as I am picking up the lingo.

1 Like

Hi @Jdl003, I will respond to both your posts here.
My experience of children is that they pick up on parents etc. anxiety, whispers and obviously when their mum is missing at a very early age and that their imaginations are far worse than knowing the reality in a language suitable to their age.
I was so impressed that you and your son could cry together and perhaps he does not have to be the tough one.
Obviously as your wife teaches at the school your daughter goes to the school will know what is going on and can support her.
In hindsight I would encourage the three of you to sit down and you give facts and updates on their mum and them the the opportunity to ask questions and have open conversations so they feel included and part of the family team.
Sorry to hear about the housework role it is never ending perhaps family and friends or at a cost a cleaner might assist in the short term.
!7 yrs on and I am still useless at medical speak, I always have to ask what things mean.
Keep having treats and spoiling yourselves, it sounds as if your wife is being looked after and that you have brilliant family, friends and children around you.

Hi @Jdl003. Really good to hear from you.
As @Erica said - it’s amazing what children pick up on. I’ve been a bit up and down this week with my 4 month check coming up. Just said I didn’t feel well but my 15 year old was very quick to pick up on this, look on the calendar and put two and two together. It reminded me how aware they are without me even noticing. It’s entirely your decision what you tell them and when, but in my experience I wish I’d had those discussions at the beginning - it’s actually quite a relief once they know. Obviously the hardest conversation I have ever had to have in my whole life but so worthwhile!
Really great news that the treatment is working. The hospital team sounds amazing and that makes such a difference. Like you said, it’s a long journey but each positive makes it that little bit more bearable.
How are you doing?

1 Like

I am doing ok, people popping round all the time, my work have been great so I can focus on my wife and helping her get though this.

Like today managed to shower and change her which was nice and didn’t feel the need to stay all day so did an Aldi shop on way back. Needed to be done.

Her parents also need looking after as struggling to process it so they came for tea tonight and to see the kids. Being so busy takes your mind off the reality I guess but I am more hopeful than I was yesterday but not deluded to the fact this is going to be a very tough and upsetting journey.

Baby steps and positive thoughts are my mantra.

This forum is a lifesaver I have to say.


Hi @Jdl003 . I read your story and it resonated so much with me and my family that I felt I had to reply. I was diagnosed with AML last May - I was 48 with 2 children aged 11 and 16. I had been unwell for a few weeks but thought it was Covid as I’m a midwife in a hospital but I eventually went to A&E and was diagnosed within a couple of hours of being there. I was admitted straight on to the oncology ward to start mild chemo the next morning to bring my white cell count down before I had the PICC line in and started the intensive chemo. Myself and my husband (who is a teacher) were devastated. I wasn’t allowed any visitors in the hospital as it was during the first lockdown so all communication with my family was via phone / facetime. My biggest concern was for our children - we just didn’t know how to tell them. My advice to you echoes what others have said - make use of your specialist nurse and consultant - they will be such a source of help and information for you and your wife over the coming months but can also help with your children. After a few days of being admitted into hospital, my consultant sat down with me and we face-timed my children so that we could explain my illness and what was going on. Although we were all upset at the time, it was such a huge relief to get it out in the open as the girls knew something was going on and it was causing them distress. The consultant spoke to them regularly during the first few weeks - answering any questions they had and sending them information (the Macmillan booklet on AML is very good) so they felt more in control and less scared about what was happening. They also had regular contact from the Macmillan nurses and were told they could contact them any time to ask questions. It really helped both them and my husband as they were all sharing the same information and could ask anything that was on their mind. I don’t know if your wife will have similar treatment but I had 4 rounds of chemotherapy in hospital over 6 months - the chemo makes you very vulnerable to infection so you have to stay in hospital for each round - about 4-6 weeks in hospital for each round. I’m now in remission and on oral chemo for a year and am even making plans to go back to work next month (although I definitely wont be doing the long hours and shifts that I did before - your wife is right, it definitely puts things into perspective and makes you focus on what is really important!). 14 months on from being diagnosed and the shock is only just subsiding - things will get better but for the next 6months, just concentrate on each day at a time and being there for each other. My husband and kids had to learn how to do the laundry, ironing, housework etc so definitely a bonus there!! Me being in hospital for such a long time also meant that they became a lot closer and communicated more with each other so that is also a positive from the whole thing. You will have good and bad days, but keep talking to each other and to the experts - they really do help. Take care and very best wishes to you and your family on this journey. Michelle


Hi @Michelle26. What a great post which I’m sure will be such a support to @Jdl003. I can’t underestimate the importance of posts like this in supporting others, both emotionally and by sharing a journey that is so personal but that also shares so many similarities.
It must have been such a shock to you and your family. I think we all agree that children are always our main concern because of our fear of what may lie ahead. You described so well all those thoughts and feelings.
How are you doing at the moment?


Hi @Nichola75 . Thank you! I’m doing good thank you. I’m on maintenance oral chemo for a year which has had its ups and downs but I’m getting used to it now and can live a normal life more or less (apart from the small matter of covid!!). I have had some counselling through work to help me deal with what has happened as it does sometimes feel like I’ve been through a trauma, and have found that helpful. I’ve had a meeting with work this morning about going back and we are trying to iron out the details as I probably can’t go back to a patient-facing role straight away. Does anyone know how long AML patients are classed as Clinically Extremely Vulnerable ? I’m 8 months in remission but work are very concerned about me being in direct contact with patients - especially since I haven’t produced any antibodies after my covid vaccines, so I’m just trying to figure out what role I can do and whether I need to steer clear of a patient-facing role and for how long. Covid has a lot to answer for ! Other than that, I’m feeling good about things and am so thankful to be in this position right now! xxx

1 Like

Wow, @Michelle26 a great big thank you for talking the time to write your posts I am sure that you will help so many people, including @Jdl003.
Putting aside all that you went through in hospital, which must have been so tough for you, also being away from family for so long, it sounds as if your medical teams were absolutely marvelous especially with your family.
It also sounds as if you family all pulled together and probably realised what you actually done running the house and a demanding job at the same time.
Please let us know how you work out your returning to work and future role.
I believe that you would be classed as Clinically Extremely Vulnerable, but if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Look after yourself


Hi @Erica. Thank you. Yes - I’ve been very lucky with my medical team who have all been wonderful with both me and my family. The nurses and doctors on the ward became my second family for all those months I was there!

I’m trying to speak with my Macmillan nurse to see if she can find out how long I will be classed as CEV for as this will affect what work I can do. I’m on the CEV list at the moment but my oral chemo ends in November so I’m not sure if I’m no longer classed as CEV at that point or if I’m CEV until I’ve been in remission for 5 years (hopefully!!) and am classed as ‘cured’. It’s all such a minefield where covid is concerned! x


Hi @Michelle26 I would be interested to hear what your Macmillan says about you being classed as CEV and for how long.
Yes, Covid makes everything a minefield.


It’s great to hear how you are doing and so great to hear that you have great support at work! Definitely worth giving the helpline a ring with any questions, and yes, let us know what your McMillan says.


She is about 80% though the first batch of chemo now and she is doing amazing I have to say. I hope she continues like this. Sense of humour there and no sickness yet. Really internalised it. Very very tired though and more hacked off at the machines bleeping all the time.

I had to tell the kids properly tonight (is it ever not awful?), so they know it’s a blood cancer, they know what causes it (well according to my explanation), what the treatment is and some other facts about it. My daughter asked lots of questions, was really upset and said it’s not fair ( my god I agree). Son I guess can’t comprehend it, he just wants his mummy back for a cuddle but I can see it slowly affecting them. Grandparents taking them to Northumberland this weekend then next weekend they are on a Disney cruise from Liverpool which we were all supposed to be going on as part of our 15th wedding anniversary and her 40th birthday celebration…her parents taking our place and a bit of Disney magic will help them all. Safe to say this year won’t be forgotten will it.

Also, thank you both for reminding me of these, as all of this to think of as well, goodness me. Saying that I will be pleased if I have to think about this sort of stuff as she will be home with us.

I was wondering about a few things now it has hit home this is her condition.

  • work, doubt she will go back to teaching full time if at all. A minefield of potential disease not to mention the stresses will not help

  • disability allowances, are people with AML entitled to anything to supplement the fact the cannot work? I imagine it will be part of the universal credit fiasco

  • travel, we literally booked a holiday to Florida for next year to do Disney etc but I can’t see that happening now as travel insurance will be a no go area for the US. I’ve seen enough episodes of ER to know what happens if you don’t have insurance in America.

I can’t believe I only found out last week. I feel like it’s all I’ve ever know. You folks are incredible and helping me cope when by myself x


I read this and can’t believe how much has happened in the last week since you first posted - my goodness, your mind must be ready to explode.
I bet you did an amazing job telling the children, even though I know it will be one of the hardest things you will ever have to do. You should be really proud off yourself. Yes - it will affect them, that’s only natural, but they will also remember the dad that was honest and open with them. How amazing is that!
Great that the children are doing something enjoyable. I think knowing the truth will also give them some strength and not allow then to make up their own stories which might be a lot scarier. It might make them enjoy the weekend even more.
With regards to your questions. Work wise I think you never know what might happen. Day by day on that one! The next two questions would be good ones for the support line Blood cancer information and support by phone and email | Blood Cancer UK.
Now - please make sure you are taking care of yourself. Give yourself some time this weekend to do whatever your body and mind needs.
Please keep letting us know how you are doing. I think you are all doing amazingly!


I can only imagine how much this all must be to process for you all @Jdl003. So very sorry you’re all having to go through this. We hope your wife’s treatment is going as well and as smoothly as it can for her. You mentioned you told your children last night - if there’s any support or info resources that you feel might be useful for your kids please do feel free to let us know and we can look into this for you if it might be helpful.
Re work and disability allowances, we have some information on this page which might be useful under ‘Benefits you may be entitled to’ - https://bloodcancer.org.uk/support-for-you/living-well/money-work/
Macmillan also have information about work after a cancer diagnosis - How a cancer diagnosis might affect your work - Macmillan Cancer Support. Your wife’s treatment team might also be able to offer advice around the sorts of benefits available. Please do give us a call on 0808 2080 888 if there’s anything we can do to support you and your family. You can also reach us at support@bloodcancer.org.uk
We would be happy to help in any way we can.


Gosh @Jdl003, you have had so much going on emotionally, physically and practically to process in a week.
You did amazingly telling your children and isn’t it interesting how both your children processed it differently, it might be worth asking them if they have any questions now and how they are feeling. Yes, life is not fair. Someone once said to me ’ your feelings are your feelings, don’t let anyone take them away from you’, wise words I thought. When I was growing up I was only allowed ‘nice and good’ feelings, that is why I am now useless dealing with anger and fear etc.
You are so lucky that your children will have the love and stability of their grandparents and are occupied in the school holidays as well.
You ask 3 questions and all I would say is No.1&2 haven’t got to be decided or solved today, just try and keep it in the day. You cannot do any more into 7 days!!!
No. 3 personally I would say I would never travel anywhere without adequate travel insurance and never not declare all pre-existing conditions. You can get travel insurance with blood cancer, not easily and at a cost.
The main thing is perhaps that your children feel included and secure, your wife is being looked after and that you take lots of special care of yourself.


@Jdl003 you already have really good answers from @Alice_BloodCancerUK @Nichola75 @Erica about benefits and insurance. I have followed your story from the day one and I want you to know that you are doing AMAZING!
When we deal a shock like diagnosis, we sort of go into autopilot and get things done. As someone who works with trauma etc. please remember to be gentle on yourself too. And like Erica said, ask children if they have more questions, they take their time to process this news and questions come days and months later. Being together is important and it’s fantastic how your whole family is rallying around you.
Lots of good thoughts to you all. Momo x


Hi @Jdl003 . Sounds like you and your children are doing amazing through all this. My husband found that our eldest daughter seemed to do all of her thinking and processing of things at night and so he spent a lot of time comforting her and going over things and questions late into the night so you may find it worthwhile checking in on your children at bedtime so they can get things off their chest that they might have been bottling up. With regards to benefits, I was able to get statutory sick pay for 6 months which your wife’s work should sort - she may also get enhanced pay depending on her employer ( I was paid full pay for 5 months and then half pay for 5 months, which included the statutory sick pay). After SSP has ended, you can claim ESA (employment support allowance) for a year. They send a huge booket to fill in but you only actually fill in the first few pages because it’s a cancer diagnosis and then your wife’s doctor fills in the back page. Keep copies of any sick notes as you will need to send these. I was also told that I should have applied for PIP (personal independent payment) but I never felt I fitted the criteria as I felt independent with my own care, but when I think back to the earlier days during and after treatment, I wasn’t totally independent as I didn’t have the strength or energy to do things like cook meals or housework etc so PIP might be worth looking into sooner rather than later. Hope that helps. Take care. Michelle x


Hi @Jdl003
Sorry - forgot to mention. Your wife can also get free prescriptions for 5 years (Not dental or opticians unfortunately!) . My Macmillan nurse sorted all the paperwork for me and I was send a free prescriptions card in the post. I’ve also been told that blood cancer patients are classed as disabled for 5 years and can apply for disabled parking permits - I haven’t done this but know of others who have. X


I just had to send a message back to you. I have just been reading your messages and glad to hear your wife is doing well on her treatment.

I was 40 too this year (also a teacher but probably won’t go back) and the beginning of June was diagnosed with ALL. I have a 10 and 5 year old and it’s been so hard to except what has happened.
I am currently home after finishing my first phase of treatment and will go back on the 26th for my second. It is lovely to be home and reunited with the family-isolation has been the hardest part for me.

I wanted to say you sound like a wonderful husband and reading your messages have made me realise even more what my own husband has been going through (also married 15 years this August)!

Thank you for sharing.
We are too looking at what benefits we may be able to get. Also look into any grants you might be able to receive with travel costs. Macmillan but me forward to a charity and we just received a generous cheque from a lovely charity as we have to travel to London for my treatment.

Wishing you and your family all the best