Sorry if this doesn’t make any sense, I’m still trying to get my head around things!
My dad has been diagnosed with Acute promyelocytic leukaemia (Acute promyelocytic leukaemia (APL)), and it’s a big shock. He was diagnosed on Friday after a bone marrow biopsy last Thursday and has been in the hospital ever since, and will be for at least two weeks. I feel very lucky that I work at the hospital he’s in (in an admin capacity), so am able to visit him regularly, and everyone at work has been amazing.
I just wonder what comes next? He’s on the IV arsenic treatment after being on something else for five days (can’t remember what it’s called) and my goal is to have him home for Christmas - is that a reasonable goal?
It’s so hard for me, my mum and my twin sister, especially as we now know what’s wrong - he was fobbed off with antidepressants thinking it was mental health-related, so I’m glad that my mum kept banging the drum for a physical cause.
I wanted to reach out to you guys and see if you had any advice, suggestions or just a hug for me - I need it!
A warm welcome to our Online Community forum. I’m so sorry for the reason you’ve needed to find us but also glad that you have. This is a supportive place where you can share what’s going on for you and I’m sure you’ll hear from others who understand what you’re going through also.
I can only imagine what a shock your Dad’s diagnosis has been for you all, and I also imagine there’s all sorts of other emotions coming up right now. It sounds like a comfort that you can visit him as you say and I’m so glad your work is being supportive.
We have some more information about Acute promyelocytic leukaemia (APL) on our website, which you may find useful to read through when you have the headspace for it: Acute promyelocytic leukaemia (APL) | Blood Cancer UK There’s a link to information for friends and family on there too.
Have you spoken to his hospital team about what will happen next? They are likely best placed to give you more information on when you may expect to have him home again. There could be many different factors to take into account to be able to answer this question. If it would be helpful to talk things through with our Support Service Team, please don’t hesitate to call. More information on how to get in touch can be found here: Blood cancer information and support by phone and email | Blood Cancer UK
Take good care of yourself and sending you a cyber hug as I type too.
Hi @AJ1443 I am so glad that you have found us.
It must be so difficult for you, your mum and your twin sister you must all, including your dad, be in shock. @Ali_BloodCancerUK has given a brilliant response.
Yes, it is lucky that you work in your hospital for visiting your dad.
I hope others will be able to share their experiences, but your dad is a unique, special person with his on medical history.
I expect that perhaps you might have thoughts and emotions all over the place, but, and I know this is so difficult, try and just take it a day at a time.
We are here to support you, no matter what the diagnosis is.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Be very kind and look after yourselves and perhaps you will all be dealing with things in different ways, there is no right or wrong.
Please do keep posting how you all are.
I had Acute promyelocytic leukaemia (APL) back in the summer of 2020, and I do remember it all being a bit sudden, stressful and difficult to take in at the time. I was on Arsenic Trioxide IV and All Trans Rhetinoic Acid (ATRA) tablets. I did find the treatment to be successful, and found taking each day at a time the best way to deal with everything.
Oh @Jobee a great big welcome and you have already shown the value of our forum by sharing your experiences.
I really look forward to hearing more about you.
Really look after yourself and thanks again.
Thank you for your kind welcome, it’s much appreciated.
It was a real shock, but I’ve come to terms with it a little bit more now. I’ve had a few times where I’ve cried, but it’s the way I process hard things. It’s great to be able to visit him so often, and I have been doing so both during the week and at the weekend.
I’ve had a look at the info, and it’s very very helpful - thank you so much.
I have, and he is expected to be home next week, with three visits to the day unit a week. It will be great to have him home, but we’re worried when he’s on his own, as he might not want to go to the treatment. He’s being a bit difficult at the moment, but I do understand why.
Thank you again for the lovely message, and have a nice evening
I’m glad I’ve found you guys too, it’s been very helpful and lovely to read all the responses. I am taking it one day at a time, staying strong for him, but also taking time for myself, and running has really helped, doing my weekly Parkrun every week and even some 10Ks.
Thank you for providing the number, I will be calling them I’m sure in the near future.
Thank you for your message and for sharing your experience, it makes me feel a bit more reassured that all will be OK. It’s fantastic that the treatment was such a good success for you, and I’m sure my dad will be the same. I’m trying to take one day at a time, and I’m sure he is too.
I have an update: the hospital said he might be able to go home next week, which is great , My mum struggling with it as things haven’t been good with my dad for a long time, and we think it might go back to the way it was when he’s on his own (as we work all week), with dad sitting in the chair drinking all day. There’s also the matter of capacity to make decisions, as he originally refused treatment, and didn’t understand the consequences of this - he started laughing when we told him he would die. They offered to give him Potassium today, and he refused. It’s so hard when he doesn’t see that it will help him. Also when he’s out of hospital and has to go to the Chemo Day Unit three times a week, he might not go.
We’re also looking into Power of Attorney which will help, but he will probably refuse that too. We’ll see what happens, but I’m worried about his decision-making. We can’t get a Capacity Act assessment unless he has a mental or brain impairment, which we have no evidence of. We’re pushing for a brain scan with a query of a small stroke/TIA, and will await the results of that.
All scary stuff! But I’m keeping active with my running and checking in on him when I can, crying and letting things out when I need to, and this forum really helps to do that.
Hi @AJ1443 I also do my local 5k Parkrun every week, in my case walk, it is such a wonderful atmosphere.
It sounds as if it might have it 's challenges with with your dad, and I do not envy you.
Please do feel free to say how it really is for you on here, I find it a very supportive forum.
Perhaps, and I am not a medical person, if he is drinking alcohol excessively it might affect his treatment, but I do not know. But perhaps it is his coping strategy to block out thoughts and feelings.
Yes, it is all scary stuff but perhaps just try and take it a day at a time and keep letting those emotions out.
We are here for you and thinking of you, please do use us.xxxx
Be very kind to yourselves
It sounds like a really challenging time for you and I guess that your dad is reacting to this diagnosis in his own personal way, but his response makes it challenging for you.
The healing regime is quite a lot - I think I had over fifty IV transfusions of Arsenic Trioxide in the end. I was lucky because I had my husband and daughters around to help. It was lovely because they would make dinner for me (I was off my food) and ensure that I had porridge in the morning of my chemotherapy infusions (it was the only thing that seemed to help me from being sick after the IV). I knew that I was loved and supported by my friends and family - and that’s all (and everything) that you can do for your dad.
That sounds like it was a rough treatment regime, but I’m glad everything is OK now. I’m also glad that you had your family around you to help, and we hope that we can be the same support for him and his recovery.
I hope that things will be OK, thank you for the well wishes.
Just a small update for you all: he’s having a blood transfusion today, which will hopefully help him feel a little better and have more energy. I hope so!
He’s getting fed up of being in hospital for two weeks already (which may have to be longer now) and the doctors are concerned that he’ll get up one day, not want to do this anymore, discharge himself and walk out. Nobody has to be forced to do the treatment I suppose. We’re also trying to get a Power of Attorney in place, but he keeps saying ''I’ll think about it", which isn’t very helpful.
I’m stressed and anxious about that and have cried a lot of tears this week, along with not having a lot of sleep. I’m going to bed early tonight though, and I hope that will help!
Thank you so much to everyone for all the support so far, you’ve been amazing and being able to write out my feelings and frustrations like this has been a lifeline.
Hi @AJ1443 isn’t it difficult for you being powerless over your dad, and so are the doctors powerless over your dad by the sound of it.
I am not surprised that you are stressed and anxious and that you are not sleeping well and crying a lot.
However personally (I am not a medical person) it sounds as if your batteries are running on low and in my book my batteries deplete quicker and it takes longer to build myself back up again.
Be ever so kind to yourself
Please do continue to write down all your feelings and frustrations on here and sending you lots of love xx
Hi Erica, thank you for your message. It is very frustrating, but he’s finally understanding that he will need to come in to the Day Unit a couple of days a week for the next year or so for treatment - I think it’s finally sinking in!
I had a better nights’ sleep last night and feel in a better mood. It’s just so much to worry about, but I’ll be OK I’m sure, just need to keep plodding along. The good news is that work have been great and really accommodating for me.
Thank you for the love, it’s much appreciated. I will continue to keep writing on here, letting you know how he’s getting on and how we all are. xx
Hi there,
Well it’s a tough regime, but I remember my consultant saying something along the lines: if you get through these first few weeks in hospital, then the prognosis is good for the future.
That was on the proviso that I followed the treatment regime. So, I am pleased that he sounds like he is on board.
I do remember that having the blood transfusions had a great effect - I would feel more energy and my brain would be in less of a fog. Let’s hope the same goes for your dad.
Take care of you too - do whatever makes your soul sing.
Hi @Jobee thanks for the update and sorry to hear that it is a tough treatment regime. @Jobee You sound as if you always have a tune playing in your head you might fancy the tread The Friday Forum Jukebox Club! - General chat - Blood Cancer UK Online Community Forum
Someone suggests 2 random, or connected with what is going on with them, words and we all suggest 2 songs with some connecting to each of the words. I often show my age by my choice of songs !!!
Thanks for sharing what has and is going on for you, I expect it will help others.
Your consultant sounds clued up.
Look after yourself and I look forward to hearing more about you
