My husband has AML and I need emotional support

I wish so much i had magic words to make it all better

Your recent times taking care of things for your family have been enough to knock anybody and now this unfair evil AML made an entrance.  

I’m so sorry.  

I can’t offer words to take all your pain and anger away but always remember  this site is a place where u can bare your soul. 

There are many wise people on here and I do hope that in one of their replies you find courage x 

Hi Jenny

Wow that's a tough read.  You've had, and still are,  having a pretty shite time.  You have every right to feel wiped out and devastated, we're all human after all.

I've had the high dose Cytarabine, Daunorubicin, and FLAGida with Mylotarg, so I have the same campaign medals as your husband.  He's obviously tough to endure that.  He's fighting, and so must you.  You're a loving team remember.  Holding hands side by side, Stoic and indominable. AML is a ghastly feckin illness, but it is what it is, and deal with it we must. But we never ever give up.

Remember, you're not a widow at 58, he's alive. Cherish every hour of every day.  Take each day as they come, and don't try and second guess the future.  Laugh and cry together.  None of us knows what the future holds, so let's celebrate the here and now.

Now give your fella a big hug and a kiss!!

Keep us posted.  You're not alone.

Hugs from Rog xxx

Thank you so much for taking the time to reply.  One of the hardest things is that everyone knows me as the one who copes and I feel like such a fraud because inside I am not coping at all.  They think that because my job is as a counsellor I somehow have all the answers and I really don't. He was readmitted today as his temperature was spiking (he's neutropenic) but hopefully it's just for a day or two but who knows.

I do try and stay positive, we are both positive people, but right now I just really feel overwhelmed.

Thanks again, I really do appreciate it

Jenny xxx

Jenny, my husband was diagnosed last May with AML. We are in our early 60,s and have been together since teenagers. Initially all I did was cry but not in front of anyone else. Always on my own. I spoke once to a councillor who asked me why I was crying so much. I told her I didn't want him to die. She said, he's not dead. He's still alive . Don't be a widow before your time.

 I'm pleased to say he responded well to treatment but we don't take anything for granted. Wish I could say the right things to help you and make you feel better. It's hard to watch your loved one suffer. Please don't hold anything in. And be a bit more selfish if you have to . Being strong for everyone else is not always possible. Will be thinking of you X take care of yourself x

Hi Jenny, 

So sorry to hear about your husband. My Mum was diagnosed back in September. All i can advise is really try to appreciate every single hour and every single day. None of us can be sure of tomorrow. Even if we are healthy, we have no guarantee. Aml is petryfing but it does make you realize what a precious gift life is, something we tend fo forget when in rush for careers money etc. Please try to stay positive, leukemia is very unpredictble and many peple who weren’t given long to live are still alive after many years. I believe you guys can beat this! 

Thanks guys.  I am starting to recognise that I always go downhill for a couple of days after he has a hospital admittance (which happened on Friday).  He is likely to be in for about a week this time.

I am trying to pass on responsibilities to others, like I am supposed to sort out my dad's headstone but I don't have the energy or the mindset so I am going to ask my sister to do the bulk of it with me just overseeing it. 

Funnily enough one of my sayings is 'it is what it is so just get on and deal with it', I always look at situations and what I can change to get a better outcome but I guess AML has got it's own rules and is totally out of my control.

I just have to try and stop my head from drifting into the 'what ifs' but that's easier said than done.

Thanks again I really appreciate your support.

Jenny x

Hi Jenny

Delegating sounds like a sensible plan.  I'm sure your sister would be only too happy to take the task off you.

When I was in my early twenties, I read a book called Journey Through Britain by John Hillaby, in which he told of his walk from Lands End to John O Groats.  I was quite inspired by the read, as he'd made the trip staying off roads as much as possible, relying instead on footpaths, drove roads, canal paths, and disused railways lines.  I decided to follow his journey!  The most direct road route between the two points is about 864 miles, but as the Hillaby route meandered all over the place, it was over 1,250 miles.

I wasn't daunted by the distance.  I just figured I'd walk 20 miles a day or more.  Once I'd achieved the 20 miles, I'd see how I felt, and either stop for the day, or keep going for a while, it was small daily bites out of a large mileage pie!!

That's how I faced AML treatment.  I wasn't daunted by the many months in hospital.  I just took it day by day, but knowing that each day took me slightly closer to the end.  On the walk, I didn't know when I'd finish, but I did have the daily feeling of moving slowly forward along the length of our beautiful country. It's the same with AML treatment.

Just thought I'd share.

Hugs to all

Rog xx

Thank you all for sharing your stories and taking the time to read mine and offer me support.  I am feeling stronger and trying to just take each day as it comes.  His neutrophils are still flat but hopefully will pick up over the next day or two and he will be able to come home at the weekend which makes things a whole lot easier, it really tires me out being at the hospital all day but that's what he needs me to do so that's what I do.

I am going to try and have a good chat with his consultant as there is much I don't understand and want to.

It has made me think about how little support there is for carer's of any cancer's in my local area unless you are on palliative care so who knows maybe the good that comes out of this is that I set something up with other counsellors I know.

Thanks again Jenny x

Hi everyone

I just thought I would update on where we are.  We are currently waiting for the results of the last bone marrow biopsy and I have chased the consultant for them.  It may be my overactive imagination but I am wondering why the consultant is not being his normal self and willingly giving the results.

During his last hospital stay a guy who we had got to know as he had AML and was on the same cycles as my husband died.  He caught an infection and two days later was gone.  This really badly affected my husband and I had some very difficult days with him.

Since then we have been to Barts and last week two of his children were tested for potential matches so we just have to wait and see.  We were told from the start that the only way forward is a transplant but they had concerns as he has COPD.

I spoke to the consultant about blasts and he said my husband's wasn't as simple as that and for him it was as much about what the other cells were doing.  He also has a condition called Essential Thrombocythemia which is an excess of platelets that are deformed.

Currently he has a blood test every week and is just being monitored.  He is very tired and still has extreme night sweats which for me is a sign that there are still leukemic cells.

I am coping better, less tearful, and more living day to day.  Some days I am more successful at it than others lol

Jenny

Hi , I am Mike Thehighlander and I noticed your post and wanted to send you a big Highlander ((hug)) all the way from Inverness.

Living on this this rollercoaster is so hard for both your husband, yourself and the rest of the family. Everything is moving on so quick and as you are all getting your heads round the last thing the consultants said they have moved on to the next plan. Does it get easier?..... well you sort of get used to it and put up with it.

I did notice that you said that two of your husbands children were being tested to look at being a possible match for Stem Cell Transplant (SCT). Please also remember there is a World Wide Stem Cell register where people have been tested and these test results are available to every SCT unit so a matched donor could also be found anywhere in the world.

I have had two Allo SCTs with cells from my brother and am doing remarkable well. I dont have AML but had a rather rare and stubborn type of NHL but the SCT has brought life back into what was a rather poor prognosis.

If and when you need we have a very helpful and supportive SCT forum where folks from many cancer backgrounds including many from AML support each other during all the parts of the SCT journey. From the initial question 'What is SCT all about, I don't understand?' through the treatment and during the post treatment. This link will take you to the various discussion pages, have a look round and see what goes on and if we can be of any help start your own thread and we will walk beside you.

Highlander ((hugs)) again.