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

Recent diagnosis
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Gosh, that’s remarkable in terms of parallel information isn’t it. Thanks so much to the folks in this forum as I can honestly say it is helping us both come to terms with the new normal. People often use the saying ‘well that’s a game changer isn’t it’ for insignificant things, well being diagnosed with leukemia is certainly a real game changer isn’t it? Like, literally everything changes in the present and will do in the future. That day last week is engrained on our families minds now.

It sounds like you are a bit ahead of us so would be great to see how you and your family get on. I hope that you are remaining positive and feeling confident you will beat this. That’s been our mantra since it sunk in, so probably after day 1 of chemo which was only Friday

I keep running over in my head a few things; I cannot believe:

A. How fast this cancer progresses from no symptoms to life threating symptoms
B. How fast the medial team treat it once the diagnosis is confirmed

Both are equally as unfathomable in their own way.

The specialists, consultant, nurses, cleaners, people who bring food are such incredible people in Sheffield and I hope others have similar experience.

I am a project manager for the government, love my job, but I can’t help feeling I want to help out with this disease going forward to help raise awareness of it and money to help with research. It feels like a calling and I am not religious at all, but something is telling me to help out just like it’s telling my wife to slow down and get out of teaching.

She had her last day yesterday so it’s all recovery mode today and sleep. Consultant came again with further good news about chromosome 16 which he said was positive. She has done great with the chemotherapy, I just need to make sure she is ok whilst immune system is so weak.

Much love all :heart:

James

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Hi @Jdl003, I think you have project managed, with love and caring, so well over such a short space of time.
Please don’t exhaust yourself too much and as we have said, a step at a time and a day at a time.
This disease is not fair and often illogical, your wife sounds so lucky with her hospital team.
Now you have your family to care for, a house to run and your employer sounds supportive.
In the future, and I mean way in the future, I am sure Blood Cancer UK would be pleased of your help.
Look after yourself James and keep posting.

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Thanks @Northernsmito26 and the similarities with your family and @Jdl003 are unbelievable.
Yes, it has also given you a new perspective of your what your husband has and is going through.
Thanks also for the ideas of what benefit’s might be available.
Do tell us more about the family isolation which has naturally been so hard for you?
How are your husband and children?
How did you explain to your children about your condition and treatment?
Look after yourself and 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.

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Hi all, thought I would post an update.

So it’s a week since she completed chemotherapy and the consultant thinks she is doing well so far. All the bloods are as expected and have flattened which is what he wanted to see, her AML is diagnosed as AML with inversion 16 which is favourable he says.

She hasn’t started losing her hair yet but we have a wig, hats and have ordered a premium wig as well just in case. I think she just wants that to happen now as she is playing a waiting game.

The consultant did say to her today he wants to write her diagnosis up as has never seen anyone presents with such high liver readings, vaginal bleeding and pancreatic pain but just have AML, so he sees her as an anomaly. I guess this is good for other future patients. He wants to do a lumbar puncture on her too to rule our any spread to the CSF, but is confident there won’t be.

He also said she will get an infection or two along the way and low and behold tonight her temperature went up and she is on antibiotics to see what’s up with her.

I guess this is par for the course reading all the case studies but it still doesn’t prepare you to see someone you love so I’ll in bed. Awful.

Otherwise she is doing ok, wants to come home and is bored out of her mind.

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Hi @Jdl003. It great to get an update from you. The treatment seems to be going in the right direction which is good to hear and I must say, the medical team sound great from what you have said. It stills sounds pretty full on but I’m glad the doctors are preparing you, not that it’s makes it any easier to see your wife so poorly.
How are you all getting on at home. Are the children able to FaceTime their mum and did they enjoy their weekend away?

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The kids are doing well, they enjoyed time away with grandparents and the weather in Northumberland was amazing.

The 3 of us at home are doing great so far, a few words here and there but we are doing ok. Thank god for the likes of WhatsApp as we have a group going on so like to send each other voice messages and video etc and stuff from school

We haven’t done many facetimes as kids easily distracted so just listening is better and wife so tired she can’t concentrate for too long either.

I am doing ok, I don’t really stop from 6am to midnight so reckon a minor meltdown is incoming (,joking) but I am taking each day at a time and getting great support from friends and family to keep me busy.

I am leaving it as late as possible to go to bed so I dont overthink things.

Kids off on Disney cruise next week for 4 days so they will love that, shame we cannot go…but another time eh

There is hope, I can see that but sometimes I wish (like in the film Click) I could fast forward time.

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Sounds like you have lots in place to keep the communication going.
I completely understand the overthinking etc. It’s hard, especially at night.
I know you were joking about the mini meltdown but you are working really hard and not sleeping much so just keep an eye on yourself. We can only take so much before we crash. I’m not being negative but just want you to look after yourself to.

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Hi @Jdl003 I had been wondering how you were all doing.
Your wife seems to be receiving really good treatment and her consultant really seems to discuss issues and pre-warn her about what might need to be done or happen.
It is a good sign that she wants to come home and is bored out of her mind.
Yes, it’s when I stop that my mind takes over with the crisis, the practicalities and the ‘What if’s’, ‘how are we going to do this’ and I am looking way into the future before I know it.
But I also know I am useless at coping if I do not get enough sleep.
As @Nichola75 says I am also concerned about you as I know in a crisis I keep going and keep going then my body says that it has had enough, it warns me a couple of times and I don’t listen and so it get’s it’s sledge hammer out to stop me in my tracks.
I then collapse in an emotional, medical and physical heap and it takes me a long while to build myself back up and replenish my batteries again.
Take care and be so kind to yourself.

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Your family have been through so much @Jdl003 and I’m really impressed by the way that you’ve coped. I was very apprehensive about chemo when they told me I had to have it but like your wife, I barely had any side effects and I was up and about and returned to some sort of normality quite quickly. A sense of humour definitely helps. I remember everyone being really puzzled that I was so upbeat. My response was, well I’m getting to do some of the things I lost when I became ill. I wouldn’t give up on the US just yet. There are companies that do travel insurance for people with cancers and even if you don’t get to do Disney, I’m sure you’ll get to go somewhere when your wife’s chemo is finished. I think you’re all stronger than you know. That was one thing I found out about myself when I was diagnosed. Let us know how things are going.

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These forums and the resources available from official channels are outstanding. So helpful for us and many others with same predicaments.

Emma has had an infection, which we expected and diagnosed as e-coli, so they identified it fast and straight onto the antibiotics and she is doing well. The consultant keeps saying she will get more, but it’s all about the patient, doctor and nurses working as a team so address it asap. The patient needs to be so sensitive to changes.

Looks like the lumbar puncture is negative for AML cells based on early look into the CSL. We caught the consultant today, but to be honest we spent more time taking about cricket. He is happy with her and they have started the stem cell door search.

Hair started to fall out so we talked about the shave today and nipping it in the bud and taking control. Anyone have experience of this and how did you approach it?

I’ve spoken to DKMS and got loads signed up via my LinkedIn profile and as I work for Gov and with big supply chain partners I think I can put a real dent into the register and I am keen to get the message out there. Even registered to give blood for first time Wednesday evening.

Life throws these horrible things at you, you have to look forward and be positive otherwise we have have no hope. It’s the only way.

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Hi @Jdl003, there is a post called Hair Loss Today on here that make be of use on the subject of hair loss, wigs, tea trays for inpatient stays etc.
As Emma is in hospital it might be worth her talking to the nurses about the best way to approach hair loss and how best to shave her head.
Emma will be the expert on herself and get to know when an infection is looming.
I’m impressed that you are going to donate blood on Wednesday night, that and the stem cell register are so, so important.
Yes, there is always a light at the end of the tunnel, take care and I hope they give you a cup of tea and a biscuit after your blood donation (do they still do that I wonder). It always reminds me of Tony Hancock’s The Blood Donor episode.

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Hi @Jdl00 , me again, I was thinking don’t forget the emotional impact for both you, your wife, children, family and friends of your wife loosing her hair and perhaps shaving it off. It is so visual and it also brings the severity of your wife’s condition and treatment home.
Take lots of care of yourselves.

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Hi @Jdl003. I hope the children enjoyed their trip this weekend. You’re family are always in my thoughts. Just wanted to let you know I was thinking about you all - no pressure to reply :blush:

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Hi there, yes we have had a nice few days off as it’s summer holidays and I am off work at the moment. Been to an actual football game with them, seen Black Window and they have had a few sleep overs. Very tiring indeed but they have had fun. I am keeping busy too.

Since I last posted a lot has happened. I went last Wednesday as I did every day prior with stuff and washing for her, watched an episode of the Queen’s Gambit (recommend btw) then was on my way out when a nurse collared me. I was then told that visitors would not be allowed from that day forward due to increased covid levels in Sheffield and in the hospital.

My wife was mortified, upset and angry about this. Queries about how muh else can they take away from her. After calming down a bit we realised that it was for her own benefit so as upsetting as it was it was video calls from then forward. She was down for quite a few days but has since come around to that way of thinking. I was really very worried about her mental health after this but she ploughed on.

I wrote to the chef executive of the hospital and surprised she responded to me with a fair and reasonable email stating that the number of covid beds means they needed to move a few into my wife’s ward as it’s secure. Good for covid patients, not so much for visiting family members I guess but that’s the problem with having an illness during a pandemic. I think we are lucky to have seen each other at all.

Physically she is doing great, so far just the one infection and her bloods have started to climb. Doctor will release her between cycles when her neutrophils climb above 0.5 and today they were at 0.22 so not far off now.

That’s given her a spring in her step now and she can’t wait to come back.

Hopefully a matter of days now (fingers crossed)

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Hi @Jdl003. It’s really great to get an update.
It’s great to hear there are lots off positives, particularly as you have faced so many challenges again. Covid has made things so difficult hasn’t it. I can only imagine how your wife (and you) must have felt when they said no visitors were allowed!
I am keeping everything crossed that she is home so soon. You must all be looking forward to it so much.
Its lovely that you’ve had some time off as well. Your strength as a family really shines through.
Keep taking care of yourself and let us know how things are going :blush:

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Hi @Jdl003 gosh, yes a lot has happened since your last post.
I suppose the key thing is the increased Covid cases in Sheffield.
I actually have been quite surprised that you have been able to visit your wife at all during Covid times as my local hospital has not had visitors over the last 18mths, except in exceptional circumstances, and parcels for patients have to be left at a reception area at an entrance into the hospital.
When I have been to the hospital for an appointment my temperature is taken, I have to sanitise my hands and wear one of their masks and only arrive a short time before my appointment time.
I can really understand you both being upset and angry, especially your wife, as you have been her lifeline and such a support to her.
She is making great progress and let’s hope she will be released between cycles soon and then you will all have a spring in your steps but please keep taking care of yourself and keep posting.

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She is home now for a few days. She was so emotional and it was lovely to have her back.

In next week for bone marrow biopsy and further scans and stuff but they were happy to send her home with a few pills and for some respite

Ups and downs along the way but this is certainly an up.

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Oh my goodness - I was so happy to read this and feel emotional for you! The children must be very happy to see their mum!
It must’ve bought on a lot of different emotions for all off you? x

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Oh @Jdl003, that is so wonderful for you all to have your wife (and mother) back home for a few days.
You certainly would not have imagined it when you wrote your first post on here.
Really enjoy yourselves, have fun and spoil yourselves, although I expect your wife will need to rest a lot.

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Hello James

I hope you, your wife and your family are doing ok today.

I’m new to this forum and your post resonated with me. I’m about a year ahead of your wife in the AML nightmare - I was diagnosed with AML last August. It’s such a vast shock, I’m really only just processing it now, and I’m sure your family will be reeling for quite some time too. But the good news is, I’m proof that within a year, people can feel Full of Beans after such a terrible diagnosis and experience - as my user name suggests.

I was 50 at diagnosis (and like your wife, I’m an ex-teacher, but with a 14-year-old son, and a husband.) I was perfectly healthy - and then I was slightly ill, and then…BAM. This horrific news.

I’ve had 3 rounds of chemo, 16 weeks in hospital with no visitors at all, and a stem cell transplant at Derriford Hospital - because I had the RUNX1 gene making relapse likely if I just had the chemo. I was very lucky that my brother was a tissue match, making the STC come about quite quickly (Jan 20th 2021.) However, unlike your wife, I couldnt tolerate the chemo at all - I had terrible diarrhoea, appetite problems, fevers, weight loss, skin rashes, and unfortunately, mild to moderate damage to my heart, necessitating heart medication for the rest of my life. But I am still here! And you may not believe this…but I feel absolutely fantastic now!

I’ve been home since the end of February. I could barely stand then, because I had lost so much muscle. But my appetite came back with a vengeance, and my dog needed walks, and I wanted to be out on the moors - so I walked a few steps every day, and pushed myself, and by April I was walking a couple of miles a day. It also - strangely - helped that my husband had to go back to work in the North Sea, as we’d had almost no income for 9 months, so I was forced to do things I thought perhaps I couldn’t. It terrified me - but it helped. And for the last couple of months, I’ve amazed even myself by completing an hour of HIIT exercise 5 times a week, plus one or two dog walks per day, and mowing the lawn etc. This, coming from someone who used to hate intense exercise and usually preferred to read a book! (I think I have been trying to prove I am ok.) I couldn’t feel healthier though, despite the hit to my heart. I’m completely over the fatigue, and have no other issues, apart from some stiffness in my muscles/joints at the end of the day. I seize up a little. But that’s it. My bloods are back to normal; my consultants are pretty pleased with how things are going, and I feel overjoyed to be alive and so healthy.

I really hope this reassures your wife (and yourself) that it is possible to get through this, and to even feel amazing afterwards. Although I wouldn’t wish AML on anyone, it can bring with it some surprising gifts too. I have a very different attitude to life now, and I am so grateful for all that I have, and every day feels so charged with specialness and love. It’s given me a kick up the backside in so many ways.

Although I’ve had a few physical issues during treatment and beyond, my biggest concern though was my mental health. I imagined living paralysed by fear that I would relapse. I felt it would haunt me, making my life not worth living. However, I decided to take control of my mind almost immediately. In the past, I had used hypnosis for a couple of things, so I looked up some hypnosis/recovery tracks on Youtube. I realise hypnosis is not everyone’s cup of tea, but if your wife feels it works for her, then I highly recommend its use. I found one in which you imagine your blood, and white cells and t-cells, and red cells etc to be working perfectly, and your healthy self from the future sends reassurance and health to your present self. I listened to it twice a day from word go, and that did my mind (and my cells?) wonders. I also found an American hypnosis track specifically to prepare body and mind for stem cell transplant. That helped too. Without these things, my attitude and general positivity - and I think my recovery - would not be nearly half as good as they have been. I think I would be in a massive depression of fear. But no - I feel back to my (enhanced) normal self, and apart from the covid avoidance issue, I am ready and able to get back to living a happy family life.

I really hope this gives you all some hope too, because I know hope is one of our main crutches through this terrible period.

Very best of luck - and strength - to you all.

Fullofbeans. X

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