Wow @Fullofbeans. What a journey you have been on and how fantastic that you are able to share this with others, along with your experiences of things that have helped you along the way.
I loved the sentence ‘I feel fantastic now’. Although all of our journeys are different, that gives such hope to people.
I agree that the mental aspect of living with blood cancer can often be the hardest part - it is for me anyway. Like you, I have found things that work for me but it’s still a work in progress!
It really is great to have you on the forum. Please keep posting and sharing. Like I said, I’m sure so many people have benefitted reading about your journey so far!
Hi Nichola
Thank you for your lovely message.
I’m so glad you have also found ways to keep mentally strong and well - I think that contributes hugely to quality of life. Fear can so easily spiral out of control. I was afraid of being afraid!
Yes, I will post again if I see someone needing AML support, although I’m happy to confess that I am losing my one-track AML mind and am beginning to move on, and so will probably only look here occasionally. But I will look.
Fullofbeans X
Hi @Fullofbeans really great to hear from you and thank you so much for your supportive post.
When you mentioned Derriford Hospital you gave me some lovely visual images of the West County where I have spent many happy times.
You also show so well how your recovery progressed and you certainly had to put the work in, wow.
I really look forward to hearing more from you.
Look after yourself.
Thank you so much, Erica. I realise that much of our recovery is down to factors outside our control - but there are a few things we can do to help with the mental and physical sides of things. Everything crossed that James’ wife has the good luck that I have had. I have been thinking about her all day. X
Hi @Jdl003. Hope the few days at home have gone ok X
Hi @Fullofbeans , it’s stories like yours that give me and Emma hope that there is an end to this that isn’t as bad as you automatically think at diagnosis. So positive, so thank you so much.
I find it amazing how much we have been up and down in the last 5 weeks. It’s very hard to process and handle sometimes.
She has been out a week now, came out last Friday evening after a few blood tests to confirm she was ok.
Man, what a week we have had @Nichola75 She has done remarkable. They were worried about her liver readings just before releasing her as they were high and as she presented with high liver readings as the AML had infiltrated her liver they wanted to check. So they let her out and told her to come back Monday for blood check.
She was a bit anxious about that and thought she would be hauled back in to the ward. Blood tests fine, neutrophils back to 4.5, liver back to normal but gallbladder has collapsed but they are not worried as it’s down to the strong chemotherapy and she has no other ailments.
So we have been to the pictures, a few dog walks and planning to go to a national trust today for a walk. Her legs are weak having sat in a bed for best part of 5 weeks but it kind of feels like normal now…but we know it is not.
We know she is ill, but we are enjoying family time together.
She is back in Monday for a bone marrow biopsy and that will dictate next step and when she will start round two
She is doing amazing I have to say and just hope we continue on this trajectory.
Wow @Jdl003, that’s certainly been a full on and packed you week for you all. It’s so lovely to hear that you have managed to get out and about and spend really special family time together.
I completely understand your wife’s anxiety around the tests etc. That’s an unfortunate part of the diagnosis - tests and waiting. I hate that bit!
I am just so pleased that your wife has been able to be at home with you all. It must have made such a difference to all off you. A silly question but how have the children handled it. Off course they are glad to have mum home but it must’ve brought a range of emotions, as with yourself?
Thanks for taking the time out to keep us updated when you have so much going on. We are always thinking about you and it’s always good to get an update and see how you are all doing.
I’ll wait to hear how the tests go on Monday. I’m the meantime, carry on doing lovely things, but rest and take care as well.
You’ll all be in my thoughts X
Gosh, yes, what a lot has happened in just 5 weeks @Jdl003 and in the last week.
I think your wife has done so well but anxiety, fatigue and weakness are par for the course. I would be absolutely exhausted after the week you have all had.
Don’t forget yourself in this process, perhaps you go through the same emotions and practicalities and you must be really exhausted too.
I expect your children have a lot to get their heads and emotions around too.
As for tests, yes I am afraid it is always anxiety before, during and after and the waiting part is the worst as @Nichola75 says.
Look after yourselves and spoil yourselves.
Which NT property did you decide on?
Please let us know how your wife’s tests go?
Hi James
Have a really lovely time with Emma, and best of luck with all the tests. I hope she eats lots to keep up her strength.
Yes, it’s a nightmarish emotional rollercoaster, there’s no two ways about it. I imagine lots of people need counselling afterwards - the suddeness and seriousness of the situation is just so much to process. It’s like being in a serious accident, because it just seems to go on and on over many months, inducing so much anxiety, fear, horror and sorrow.
I found learning I had the RUNX1 gene and needed a SCT very difficult. And hearing about the damage to my poor heart (I have now rationalised this as no different to damage to other equally vital organs. I would have taken a hit to my liver to survive. No different.) There may be points like this for you and Emma. If it helps, these low points for me don’t seem so bad in retrospect. The new unknown just seems so frightening in this context.
And remember that she has so much going in her favour. She’s young. She was healthy before this diagnosis. She was diagnosed and into treatment quickly. She has you and her children to live for. She has had some good news about her genes. She’s tolerating the chemo well. All this adds up to a brilliant start.
My GP told me, “AML is now emminently treatable, but it’s a marathon, not a sprint.” I repeated the phrase ‘eminently treatable’ to myself quite a lot, and it was a huge comfort.
My sis is a hospital consultant (different specialism) and she frantically spoke to haematoligists online about my general situation. She’s a panicker, but she was reassured enough to calm down quite a bit. : )
And I read to not put too much store into the prognosis statistics given, because there isn’t that much long-term and accurate data, because AML treatment has got significantly better recently (particularly survival of SCT.) The statistics are really just best guesses, because medics need to give statistics when gaining consent for chemo or SCT, for example, and obviously err on the conservative (and probably out of date) side. And, we are individuals, and many individuals confound the expectations. We’re not all on the median trajectory - that isn’t possible. And I have met many survivors at the Late Effects SCT clinic I go to, and they have survived the more aggressive AMLs. People do get through this. If you want to read other AML (long-term) survivors’ positive stories, the Leukaemia Care website has many of them, and they were a great help to me.
I hope this helps you both to take heart. In a few months, the worst of this could be behind you.
Enjoy your family time, and please don’t feel any pressure to reply.
Best wishes
Rebecca X
Hey all. Mini update. She is back in tomorrow for round 2 of the chemotherapy, but consultant seems happy for her to do recovery at home so she may be out in a week or so. I feel good about this but also anxious know she will get an infection at some point at home which means she needs to go back in. Better for her mental health though
She had results back from her bone marrow biopsy and these show no Leukemia cells evident which is brilliant news. So technically, for now, she is in remission.
They need to send samples to London so they can check for MRD (minimal residual disease) so trace cells.
I’m taking kids all sorts of fun places next week whist she is in.
Hi @Jdl003. We all love getting yours mini updates and appreciate you taking the time to let us know how you all are x
Lots of good news there and things seem to be going in the right direction.
It’s great you are making use of the time to do fun things with the kids. How are they?
I can sense the anxiousness about your wife getting poorly and completely understand that. Have the team been clear in informing you of what that may look like so that you don’t worry when it happens?
We always say it - make sure you take care of yourself. I know the children and your wife are your priority but remember you as well. I know you have lots of support around you am I’m sure they are keeping a check on you!
Enjoy next week and I hope the next lot of chemo goes well. Sending lots of love to you all X
Hi @Jdl003, a mini update but with a lot of mostly good news in it.
Sorry to hear that your wife is back in hospital tomorrow for 2 more rounds of chemo but it would be great if she can recover at home. Perhaps better for everyone’s mental health.
The bone marrow biopsy, probably not your wife’s favourite test, is brilliant news.
Yes, infections are par for the course and are best nipped in the bud by the medical professionals.
I believe MRD tests results can take time.
Your wife has been through so much emotionally, physically and practically and it will take a long while for her to replenish her batteries and she will probably need quiet times. You, especially keeping everything running so smoothly and compassionately, the children, your family and friends have also been through a lot emotionally and physically and perhaps you will all need time to recuperate too.
I’m getting excited about all the fun places you are planning for the kids next week, I await hearing about them and I think I would like to come too!!!
Keep posting.
Really great to hear your updates @Jdl003 and @Fullofbeans . @Jdl003 you have certainly been on a rollercoaster and @Fullofbeans you certainly live up to your name. Onwards and upwards both!
Hi @Jdl003. I often think about your family and wonder how everybody is doing?
Thanks Roskie for your post. My husband is 62 and was just diagnosed with Acute Myeloid Leukaemia around three weeks ago. He seems to be on quite different treatment from what I have read on here. He has started intense treatment and bean on (ATRA/arsenic) although has had five days chemo when the atra caused diferentation. Its been a bumpy ride to say the least (infections, low blood pressure, stomach upsets, high temp, night in the hau) but helpful when you said that somedays you cant walk accross a room. Its hard to stay hopeful when it seems like one step forward and three back…
Hi @Catpat I am so glad you have found us you must both still be in shock.
So much has been happening practically to you both in 2022, let alone the emotional and psychological side. I felt I was suddenly on a rollercoaster I couldn’t get off.
We are here for you both, so is the Blood Cancer UK website and if you would like to talk to someone then the Blood Cancer UK support line is there for you both.
Yes, there are a lot of treatment regimes now and the good news is that they are targeted to the needs of the individual patient.
I think so many of us have had the feeling of one step forward and 3 back.
Often it does not matter what the blood cancer is or your relationship to it is we all share the same fears, thoughts, emotions and practicalities
Personally that is why I think it is why it is so important for you both to look after yourselves and be kind to yourselves.
I think being a spouse you are an unsung hero.
I look forward to hearing more from you.
Hi @Catpat and welcome to the forum.
I bet the last few weeks seem quite surreal, what with the diagnosis and then moving on to treatment so quickly. Your emotions must be all over the place.
Erica has signposted the support line if you need it. Sometimes it’s good to talk things through and hear a voice at the end of the line.
Like you said, the journey can sometimes be one step forward and three back and that can be really difficult to manage. All you can do is to take each day at a time. It’s seems that there is lots going on so keep a list of any questions that you think off, they can easily be forgotten with all that’s going on.
I have lymphoma so can’t comment on your husbands particular treatment but I’m sure there will be others who can share their experience.
Your husband sounds like he has amazing support from you. I hope you have people around who can support you to. Of course, we are always here for you.
Take care and keep us updated X
Thank you Nichola for your reply (you were so nice it made me cry). I will call the helpline. I was coping fine until public health stopped the visiting because of covid and that has tipped me over the edge. He had been fairly well the last time i had been in but has had lots of problems this week. I hope your treatment is going well and wish you all the luck in the world. Thank you for taking time to volunteer for this forum when you are going through this yourself
Thank you for replying Erica…A rollercoaster is the perfect description. The doctor was so positive when we first went in so (naively) I didnt expect all the bumps in the road we have had so far. He now has gout (another side effect) so is in a lot of pain too which is so difficult. To top it all the hospital have stopped visiting due to covid so we cant see each other. I hope things are going well with you Erica,
Oh @Catpat it must feel the final straw that visiting has been stopped, so isolating, fearful and you must be feeling so alone, but you are not as you have your forum family who really understand what you are going through now for support now.
Have you got any support from family and friends and can you stay in contact with your husband remotely?
As your husband is in hospital the staff can help with any side effects.
Please keep posting how you both are and as @Nichola75 and I have said the support line is there for you.
Be kind to yourself