My dad recently diagnosed with Leukaemia. I don’t know what type, or what stage. I think it’s acute given his symptoms and how quickly it hit.
Everyone around me says stay strong, and be positive. But I’m terrified. My mind is going to the darkest places, and my first thoughts are that I’m not ready to lose him. There are so many things that I don’t know how to do yet.
I’m also preparing myself for the journey of treatment. I have inherited a sibling in this process as my mother will be primary cater for my father - and I’m worried about her as she’s still a young child. How do I step up and offer hope, but be realistic and prepare for the worst at the same time.
Hi @MazB I am so glad that you have found us and firstly never apologise for what you feel is negativity.
I certainly do not feel it is, I think it is honesty and I am so impressed that you felt you could be honest with us. I think that is the really supportive part of our forum that people can say how it really is for them and not feel judged or their feelings taken away from them.
We have all been there as a patient, family member, friend or carer.
It does not matter what leukaemia your dad has been diagnosed with your thoughts and feelings will be the same.
It is so, so natural to feel terrified and scared and your head go to the worst scenario. You have all had a tremendous shock, you all need time to process the situation.
I was diagnosed with a leukaemia 19 yrs ago at age 53yrs and I am still here and life is good. I came straight home and wrote my will and funeral music.
By you asking what you can be doing shows the sort of caring person you are.
Letting your dad/parents talk, asking them how they are feeling, they are probably feeling and thinking similar to you, that is OK.
I think asking not assuming is so important. I am just throwing out ideas here, it might be giving your dad or parents a lift, doing the shopping, cooking a meal.
Being there for your mum as well as your dad is also important.
Try not to think too much about the future, just take it a day at a time and you have entered a world of medical jargon and waiting for appointments, being out of control which are all horrible.
Please do keep posting on here you are part of our forum family now.
Hi there
Your not negative just experiencing feelings that occur naturally when faced with death all the questions going around your head
There is no right of wrong way to feel you will experience all sorts of feelings
What I encouraged my kids to do was ask questions and any I couldn’t answer I asked my consultant
My daughter was learning about stem cells at the time which helped her with what Myeloma was about.
My son was much quieter but had great support via work and was given a buddy to share his feelings
I constantly talked about myeloma about being cross sad angry and that was ok but not to stay there and to keep going forward with me. I say you can’t give it back so I was going move on with myeloma
My kids especially my daughter would say not again but she would sit and listen
Life as we have all found out is very short you can either fear the worst or embrace and love whatever time is left, you don’t want to miss a minute make those memories you have been putting off even the tiny ones
Hopefully you can talk with your dad tell him you love him
As parents we want you to be ok and will often focus on you kids and try and protect you
Hi @MazB,
A very warm welcome to our forum and thank you so much for sharing all with us. I am certain you will be scooped up here and offered some really lovely support to help you through this dark time.
I am so very sorry to hear of your dads recent diagnosis. May i ask how he is doing?
It is honestly so very understandable & normal when dealing with such a trauma, to be feeling terrified and confronted with the worst possible scenarios. It must feel like such a roller coaster of emotions right now. I do hope you are coping okay?
I think stepping up comes in so many forms and simply just by reaching out into a new community where you can be supported and therefore give support to your dad is a huge step. The simple rule of ‘a day at a time’ can seem impossible but often it is great advice that allows you to tackle what’s in front of you rather than ahead of you.
Being a carer for younger relative & balancing your own sanity & health whilst taking in all the new emerging information must be incredibly hard, so please do be kind to yourself too.
Thank you for reply. I’m avoiding asking my mum too much as she can’t really process it and is putting her head in the sand. Dad worries so I don’t want him to worry, I need him to try and focus his energy on beating this thing and the last thing I want to do is distract him from that.
This forum offers comfort in the fact that others seem to understand what is happening.
your story is inspiring and offers hope - so thank you for sharing and responding so quickly - it does mean a lot.
Dad had his biopsy today - and was told he’d have “full results” in around 3 weeks. Trying not to read into what any of it means though.
Thank you for your kind words and sharing your experience. The last line especially brought me to tears. In a good way.- just about digging deep now I guess.
You are right - need to cherish the good moments.
I haven’t spoken in depth with dad about the leukaemia - instead trying to focus on the “normal” day to day things. I’m worried that he’ll think I’m worried and won’t handle things in his absence if I’m focusing too much on the cancer.
Thanks for being so kind. I have good and bad moments to be honest. It comes in waves. I’ve always struggled mentally and worry I won’t have the strength to see it all through.
Dad is trying to remain really positive but we don’t really talk about the diagnosis. He had a biopsy today, so praying for any kind of light in the darkness really - but also trying to prepare for the worst. I don’t really know if it’s as black and white as that or not? I was told to stay away from google - so have been reading as much as I can from this site.
I think the part about caring for my family sees me in a hard position. I love them and would do anything for them. But I just worry that I won’t live up to the support they need and I don’t want to let anyone down.
I probably will take up the offer of getting in touch over the phone. The last thing I want to do is clog the forum, or risk repeating myself.
People on here seem so lovely and my heart breaks that such a horrible disease is what brings such good people together into a community.
You can never let anyone down by loving them unconditionally
The little things make the biggest difference dont over think just be love
Don’t take the bad days personally they just are what they are
Preparing for all eventualities is a good thing I think
You can’t clog up the forum it’s got more space than you can fill
Good Morning @MazB,
Please don’t worry at all about ever clogging up the forum. That is exactly what we are all here for. If this space in addition to calling the helpline helps free up some breathing space for you or even in a small way is a tactic in being able to cope then we are very much here for that.
I think not having the diagnosis type is a really difficult place to be in, as naturally the internet will be a place to try and find answers. However it’s worth remembering that no one, out with your dad haematology team, have his results so staying off google is always a good idea.
It is likely that once you have the full picture & a better understanding of what his condition means that you will settle somewhat and no doubt be clearer in your head on how best to support him.
Until then do keep reaching out for support in any way that feels right…
Oh @MazB you could never clog up our forum, that is what it is here for. and it certainly does not matter if you repeat yourself
My husband has had his head in the sand for years, he cannot do emotions either. That is just how he is, I don’t think there is any right or wrong way to be.
Perhaps we all have our good and not so good moments, we would not be able to appreciate the good times if we did not have the not so good times to compare them
with.
I bet you would never let your family down as you say you love them and would do anything for them, it is weird but I find the strength when (if) it is needed.
I am so impressed how self aware you appear.
Do you think you might need some extra help at this time, I actually got counselling through my employers that helped me, sometimes our GP’s are good at knowing of local services.
Blood Cancer UK have some handy hints on mind and emotions Blood cancer: mind and emotions | Blood Cancer UK
I realise having to wait 3 weeks for your dad’s results must seem an age, but that is often par for the course and you cannot read anything into that, that doesn’t mean it is not a worrying time for you all.
I have found that my skill at 2nd guessing is useless.
You have us all to support you and your family now so just look after yourselves, keep communicating and keep posting on here.
If you manage to clog up the forum I will eat my hat as the saying goes !!!
Thanks again for reaching out. And thanks for being so nice about it. Even speaking is something new.
Found out today that dad has ALL. So that’s the first step I suppose. We know that he’ll undergo chemotherapy and then some kind of stem cell transplant. He seems positive, but was emotional when he told me - tried my absolute hardest not to sound or be emotional back.
I called up the line earlier after speaking to my parents and it helped talking. Am still very nervous as I know the hardest parts are to come - but I guess it’s one foot in front of the other for the time being and to keep walking on this journey.
Today was hard, but hoping for some light soon.
Thank you to and everyone else on this forum - I can’t tell you how much your time, support and kindness means to me.
Sorry to come back in @MazB but you have really struck me with your words ‘it’s one foot in front of the other for the time being and to keep walking on this journey.’
Wow, so, so true and profound, I will remember them forever.
Please do make sure you find a space to work through your pent up emotion, it might be talking to someone you know or don’t, processing it on a walk, in the bath/shower or in bed or I find I get like a pressure cooker which does not do my health any good.
Please do keep ringing the Blood Cancer UK support line when you feel the need, you will not clog that up either!!
Thank you for your words
Hi @MazB and welcome to the group,
I have skimmed through your post and all the replies and I haven’t spotted how old you or your father are, but i wanted to share my experience to offer you some hope…
I was 41 when i was diagnosed with Acute Myeloid Leukaemia 8 years ago. Slightly different from your father, but still an acute leukaemia. I had a stem cell transplant 6 years ago and I am doing fine now. It’ll be a tough journey during his treatment but the advances in treatment in recent years have been phenomenal. Google told me that i had just a 15% chance of survival, but Google is always out of date and not accurate. I’ve now learnt that during my treatment in 2014, survival rates for Acute Myeloid Leukaemia were more like 85% and they are improving all the time. My intention is to offer you hope. Don’t rely on Google and speak to your father’s medical team before making any assumptions. I know you are searching for answers, but you will need to be patient. One step at a time.
Best wishes,
Jane
Thanks so much for reaching out. I’m 28 and my dad is 58.
Firstly I just wanted to say how happy it made me to read that you’re doing well and I’m so sorry you had to go through it in the first place. Sounds like you’ve had an incredible journey,. Secondly, to take the time to read my post and talk me through your experience means a lot - I know it can’t be easy.
Someone this week told me that there is no blueprint for this, and I’m trying to stick to that. But hearing your experience does give me hope, and for that I’m so so grateful.
I left the house today for the first time in a week and it felt nice to get out. I’m fully aware this isn’t my pain, or my journey - I think my initial reaction was fear and dread which just stopped me in my tracks.
Dad is meeting his medical team on Monday so I guess it’s day 1 of the journey from there.
Thanks again for reaching out and I hope you have a good weekend x
Hi maz
It’s as much your journey and pain as your dads
I’m 54 was diagnosed at 49 my kids were 15 and 19 at the time and I am a single parent I have been through 3 regimes of chemo and two stem cell transplants and I’m still going
Dr Google would have had me dead 3 years ago thank goodness I avoided him
Meeting with the team will give you information on the start of this journey that you are all on and hopefully give you a bit of reassurance
Will you be with dad for this?
I’m going to link this you maybe 28 but I think your a young carer so ignore the 25 I think it’s gently informative
Hi @MazB yes, I also find that fear and dread just stops me in my tracks.
I am also a great believer in fresh air and appropriate exercise, I find it sets me up for the day and I often work out things that have been bugging me.
I avoid crowded places.
Just think how well you are doing even since you had the courage to write your first post.
Please let us know how Monday goes and I hope it answers the questions that you have.
Look after yourselves
Thanks so much. I’ll keep you in the loop. Dad seems positive, and I think it’s radiating to everyone.
Personally I’ve been in a place of trying to adjust to this new normal and manage the journey. From what I’ve read on the forum, and online it’ll be a long road. But there’s hope as of now.
Saw dad for the first time tonight since dropping him off at the hospital a little over a week ago (he’s now home following biopsy, and treatment for a bacterial and viral infection).
As mentioned, it’s confirmed he has ALL.
It scared me how frail he already looked and I feel scared all over again. Mum isn’t coping too well, and neither is my younger sister. I think I’ll have her move in with me fairly soon.
Can anyone who’s been through this advise on their treatment and when they seemed to feel “normal/better” again?
I feel scared to be around him and see him like this and feel cowardly because I can’t face up to it. Is this normal?
I wish I could transfer all of his cancer to my body and fight it for him. He doesn’t deserve this.
Hi @MazB I think it is very normal finding it difficult to be around someone who you can see is looking frailer and I definitely do not think it is cowardly at all, it just shows how much you love him and how honest you are about your feelings.
It sounds as if, very naturally, your mum an sister are struggling too.
I expect there is some powerlessness to make your dad better in the mix too.
Nobody deserves to get a blood cancer.
All of you look after yourselves and do some nice things together and spoil yourselves
but she would sit and listen