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My dad has leukaemia

(9 Posts)
Laptopontable Wed 25-May-16 19:36:44

My dad was diagnosed with acute leukaemia on Monday.. he's 57 and we were supposed to be going on a family holiday on Friday. Not dealing with this. I'm absolutely devastated. How do you get past the unfairness of it all? How can I support my mum? What will chemo do to him? I can't get past that life has changed for us for good regardless. Does anyone have any success stories? Or experience of this at all? Sorry for rambling , I just keep thinking that this is a nightmare I'll wake up from. He should be looking forward to the birth of his grandchild as I'm 28 weeks pregnant. sad

bumbleclat Wed 25-May-16 20:26:22

I am so sorry you are going through this.

My mum is 63 and was diagnosed with AML on 25th of March so I can fully appreciate the sheer shock that you must be going through, I am 8 weeks or so into this whirlwind so can answer ANY of your questions.

Hold on tight it's a rough old ride but there is a lot of hope and amazing treatments now for AML so he will get through it.

The shock is VERY very difficult to swallow, I didn't sleep well for weeks, but the more informed Ive become the easier it is.

It does feel so unfair, you will find that you can help your mum in many practical ways and by being there for each other.

Chemo is gruelling because it makes them really tired and compromises their immunity so they catch many infections very easily, my mum has mainly suffered with tiredness because all the other symptoms have been managed with medication from the hospital. e.g. when she's sick they give her anti sickness tablets, when she's breathless they give her a ventilator, when she was anaemic they gave her blood in a drip etc.

I have two people in my family's close circle who have got through acute leukaemia and are still hail and hearty today one 5 year on and one 15 years on so theres loads of hope.

I too am pregnant but that gives them a reason to fight for their life whenn they're feeling low.

Please ask me anything if you like I know the feeling of thinking it's all a bad dream and then you realise it isn't- it hits you like a truck doesn't it.

Just try and take one day at a time, there are good days and bad days there really are.
flowers

Laptopontable Wed 25-May-16 21:12:41

Thank you so much for your detailed reply. Im so sorry that you are going through this too.
My dad is usually so fit and healthy. He runs up a mountain every weekend so the thought of him being frail and possibly on a ventilator is horrible and I don't know how to deal with it. He's going to be so bored stuck in a room for weeks. How to keep his spirits up?
How often do you visit the hospital? Do you have other children and if so do you take them to see your mum? I have 11 and 10 year olds who are desperate to see their grandad but I'm not sure.
I really just don't want our lives to change. I'm so sad for my parents.
Do you think it's possible for our lives to return to normal one day?
Did your mum have some chemo then come home and have to go back in?
My dad is having approx 6 week chemo as an inpatient with a break at home then back in for some more.
Thank you X congratulations on your baby, when is it due?

bumbleclat Wed 25-May-16 21:59:49

You're so welcome, I would recommend only looking on Macmillan or NHS to do your research as there is a load of nonsense out there on the internet and when you're feeling vulnerable and sad, those places are unhelpful.

Your dad being so healthy will stand him in VERY good stead for this treatment so it's not gone to waste, my mum had to have her kidneys flushed because they were worried that her kidneys weren't strong enough to withstand the chemo but after 24 hours on an iv drip she was good to go so your dad will be fine.

The consultants told me that chemo doesn't hurt (which is what I was worried about) the main difficulty that people experience is depression because it's very hard going through one cycle, being in isolation and the side effects and fatigue, then coming home after a few weeks for 2 weeks then having to go back in and repeat the process, come out for two weeks and then finally go back in again, so plenty of family/friend visits (daily) are very helpful to keep their spirits up.

I think children might be a bit tiring for him, perhaps when he comes out for a couple of weeks that would be a good time for him to see his grandchildren, my mum has wet herself when I've been there and had lots of diahreah (can never spell that) which might have been a bit demoralising if anyone else had witnessed it.

Also your kids go to school so might be carrying bugs and because the chemo compromises their immunity it is extremely important to keep germs away from them.

I do a 6 hour round trip every Saturday to see my mum in her isolation unit in hospital (Im a full time teacher) I ring her every day (your dad will have a free phone and TV by his bed as all cancer wards have free phones) though my mum hasn't had the concentration for tv or radio.

My large family at least 1 person visits her per day.

Be prepared to visit him for 20 minute bursts then go off to the cafe for 40 minutes to let him rest, then come back etc, tell him to be honest about when he would like to just sleep.

I was so scared of seeing mum frail and ravaged and it was a bit shocking at first but you're so busy keeping a brave face that this strength comes from somewhere almost quite a maternal feeling.

Life will go back to normal one day and this year will be a bad memory that brought you all MUCH closer together and forced you to make an amazing, loving team.

My mum's treatment plan was/ is as follows:

Into isolation unit in hospital 10 days of (what they call induction therapy) which aims to kill all of the leukaemia cells, it is chemotherapy- 3 weeks in hospital recovering from various infections she picked up after the chemo then 2 weeks staying at home with my family taking care of her.

At this point we were told they had found she had a remission from cancer but there would be a 90 percent chance the leukaemia would return within 2 weeks if they didn't continue the chemo.

Back into isolation for (what they call consolidation therapy) a very powerful much stronger dose of chemo but only 8 days worth this time. 3 weeks recovery away from germs and then 2 weeks at home again.

Repeat last process again then possibly have a bone marrow transplant in another hospital where she will stay for 3 weeks to recover (the transplant will just be a drip) but the recovery process is about 2 years of having to stay in very clean environments and being very tired as the body repairs itself.

Has your dad got a sibling who might donate some bone marrow? If not don't worry there are donors and another type of transplant that doesn't rely on family donations.

So this is a long road but it will lead to his eventual recovery, in the mean time make sure you eat well, sleep well, all look after yourselves as well there's no use in you running yourself down trying to run around after everyone else.

Thanks, baby due in December but everything's feeling very compartmentalised at the moment.

PS you will be surprised at how quickly your dad goes from really ill (through the treatment) to really rather well (when they let him out for his 2 week break) so take hard, it will feel like aeons to him but there are lots of dates to work towards and break it all into chunks.

Please feel free to ask anything x

originalmavis Wed 25-May-16 22:06:49

What have the doctors said? Your dad is still on the young side and is healthy.

Chemo is a bit like neuking the body - it's harsh but necessary to blitz that bloody cancer. It makes you week so take him good food, no flowers or plants, noone with coughs or sniffles within 50 miles.

BurnTheBlackSuit Thu 26-May-16 17:59:22

flowers. How are you doing today?

Not quite the same, but my Mum was diagnosed with Chronic Leukaemia (CLL) a few months ago. She is stage B I think, so needed to have chemotherapy. Her treatment is in 4 weekly cycles so slightly different to the acute leukaemia treatment described above.

I think what she finds hardest is that, similar to your dad, before she was diagnosed she was really healthy and it seems like it is the chemo making her ill. Also the (seemingly) never ending nature of it.

It's a hard old road, especially when you are climbing the mountain and can't see the top. I think you just have to keep focused on getting to he other side.

Laptopontable Thu 26-May-16 21:43:57

Thanks all for your replies.
I'm feeling a bit better today, he's seen the consultant and has a treatment plan in place. He's going to have 7days of chemo, 6hours per day and then four/five weeks of recuperation in hospital. Then a week at home and then back in for a final week of chemo and home to recover. They have said it's curable so I'm focusing on that.
I'm finding it hard because I can't be at the hospital all the time and I feel helpless at home. But I feel more positive that there might be an end to this.
I am expecting him to be very ill this week with the intense chemo and I'm scared how I'll react to seeing him like that. Will he lose weight? How will he look? Will he lose any mental functions if that makes sense? Memory or anything?
We have a family WhatsApp group and that is keeping us going, I sent a recording of the babies heartbeat today which cheered him up.
Just keep thinking life was normal this time last week and I'd give anything to have the silly little worries that I thought were huge back now! I really do think it will change how I think!
Sorry it's rambling, I'm just writing as I think of things. It really helps. Thanks for reading flowers

BurnTheBlackSuit Thu 26-May-16 22:16:03

I can't really help with what effect the chemo will have on your Dad- he is haveing a far more intensive short term course of treatment than my Mum is having and it affects different people differently. Has he got a good digital thermometer to monitor his temperature? I know this is an essential to keep an eye to make sure your not getting an infection or having a reaction to the chemo. I guess when he's in hospital they'll monitor him, but he will need to keep an eye when he's at home. He might like some magazines to read whilst he has chemo- books are more tricky as you have to hold them open which can be tricky with the lines in.

It is good he/you know the treatment plan and what will happen so you have an end in site. It's also lovely you have been able to send the recording of your babies heartbeat to give him something else to think about.

You must make sure you are kind to yourself too as it will be hard for you as well. Make sure you have relaxation time. It can be hard to switch off.

bumbleclat Thu 26-May-16 22:23:33

I'm glad you're feeling better today.
It's great that you've got family support too.

He might seem okay for the first week then a bit ill in the coming weeks.

My mum's a bit forgetful and the physical changes have been bruising on her arms, blurry vision, not too bad weight loss, hair loss and for her first round of chemo her lips came out in these rather painful blackish blisters which they gave her some anaesthetic liquid for that she could put on whenever she needed.

So in terms of physical changes (I really worried about this too) it hasn't been as shocking and horrid as I thought because I see her regularly.

I know what you mean about feeling helpless when you're not there but his day will be quite busy with bloods, obs, medicines, X Rays and food/ drink and he'll be sleeping lots so don't worry too much he's exactly where he should be for getting well.

Try to remember that chemo is a medicine because it appears as a poison but if you can hold on to the fact that it's actually curing him you might get some comfort (I have)

This time has taught me so much about silly worries and how much they were stopping me from enjoying my job for instance- I'm not anxious about that at all now, each day I just do my best and things are going well, I think this kind of thing changes the way we think for the better.
Take care flowers

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