Dad just diagnosed - stepping up

Hi Maz
Just know that everything you are feeling is normal reactions
We all think our parents are invincible and to see your dad looking fragile will take a while to comprehend
His body is working hard to recover from infection as well as ALL
Don’t be scared to be with him he is still dad just be aware of colds coughs etc wash your hands you can use sanitiser, be more aware of hand hygiene
We have worn masks in our house when I came home from my transplant

I’m sure my kids were scared, shocked they both became my carers they were brilliant bringing me cups of tea sick buckets etc

Dad won’t break he is still dad in that body

I can’t advise on dads treatment
Mine was tough but I look like my normal self now after looking frail

Can I ask what it is your scared of being around dad and perhaps we can help with those fears

Big hugs

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Hello @2DB & @Erica

Thank you for the advice. All part of coming to terms with everything that’s happened.

I think two things about my fear. Firstly I’m scared of giving him an infection and secondly I’m scared to see him so frail and almost want to avoid facing him.

I also found out today that my job is at risk so I’m scared I can’t provide for everyone. I’ve just taken on a new mortgage, will soon have my sister here and am supporting my parents.

I’ve never struggled as much as I have today. The weight of the world is on me and I’m about to buckle under the weight.

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Dear @MazB
I am so sorry to hear that you are struggling and we wanted to reach out to you if you did need to talk. I am on the phone line until 19:00 tonight and we are open every day of the week.
Please don’t be fearful of visiting your Dad, as long as you are well with no signs of infection you are safe to go in with a mask. I am sure he will be reassured by you being there. With Acute Lymphoblastic Leukaemia (ALL) the induction (first) stage is always a challenge as the aim is to get the disease under control whilst tolerating the treatment and coping with the diagnosis. So it is a lot to deal with for you all. There is help though and please do call his Clinical Nurse Specialist for updates and explain your concerns at home. Also, you mustn’t take everything on yourself, ask for support and help. Friends and family often feel lost as to what to do but sometimes simple things can be hugely beneficial. Please have a look at our pages for carers:
Practical support for carers | Blood Cancer UK
Take care of you and do call if you need us.
Gemma

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Hi @MazB,
I am so sorry to hear about the additional stress & worry of your job being at risk. I know right now you will likely be feeling the weight of the world, as you are most certainly under a large amount of stress & uncertainty.
I am however so pleased you have this space to help share everything & never hesitate to reach out to us all.

The worry of seeing your dad frail is so normal, as he has been battling a number of different problems and it is likely with time and the right care, you will begin to see him looking stronger again. Being home for a time will certainly help him get some rest and much deserved TLC.

Infections will always be a risk for anyone living with blood cancer & it can mean a new way of living when around dad by taking simple precautions such as good hand washing, avoiding visiting if you have a known cold or cough and where appropriate wearing face coverings.

However it’s also important to remember that some infections cannot be avoided and not all are passed on from person to person.
With your dads immunity being lower than normal his body will have some deficit in fighting any infection and this will be despite everyone best efforts at keeping him safe, so please don’t put too much pressure on yourself.

Having infections during and around chemo can be common and often as he has just proven, receiving antibiotics will be enough to counteract his symptoms. The most important thing is that he is made well aware of who to call ( incl out of hours contacts for his haem team) should he notice any changes or a fever starting.

Always know Maz that our helpline is here for you and simply by off loading somewhat may help you in turn feel a little lighter.
So never hesitate call us- 0808 2080 888. We are also open late this evening until 7pm.

Take care of yourself, Lauran

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Everyone else has said everything i would have - although much better. As someone walking much of the same path as you, i just wanted to pass on my support and every good wish. My dad has a different cancer tho so i can offer no words of treatment information but i can listen, and understand, the fear, the weight of your world, the pressures of perhaps being the one looked to for support, or being the one who chooses to step up. I understand the way the world shifts when your dad is ill and becomes frail all of a sudden. And i understand the thoughts of a world without our dads. So, im sorry ive nothing other than i see you, i hear you and we can do this. My wonderful best friend who i lost almost 3 yrs ago said, when diagnosed and fighting, “we can do hard things”. And we can, we do and we’re not alone, ever

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Hi Gemma,

Apologies I’ve just seen this. Thank you for your advice. I’ll give you guys a call tomorrow - really appreciate it.

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Hi Lauran,

Thanks again for the advice. Just been a really hard few weeks. I’ll give you guys a call at some point soon.

Appreciate you replying once again.

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Sending my love, prayers and thoughts to you and your dad .

Thank you for acknowledging this. I’m struggling for words tonight but am emotional reading your message.

I hope you’re coping - you deserve good things x

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Oh @MazB I really feel for you feeling that you have all the weight of the world on your shoulders, what a pressure for you at your age.
Perhaps something that has helped me is to just taker it a day at a time, manageable chunks, even at times an hour at a time.
Through Covid isolation times my husband went into shops for food and prescriptions and neither of us got Covid, but we could have done, there are only so many precautions you can take.
Perhaps with your fear of seeing your dad so frail the more you see him the more you will get used to seeing him as he is and that will be so much better than your imaginings. It must be scary for your dad seeing himself so frail and for your family.
What is the situation with your job?
Please do talk about your financial concerns, if you feel you can, with us and/or the Blood Cancer UK support line. Sometimes just sharing things helps.
If you do become your dads carer you might be entitled to a carers allowance
I know I have said it before, but it is so important that you also really look after yourself so you can deal with what life throws at you.
Be ever so kind to yourself, you are so honest and self aware and you are coping so well.

Thanks Erica. I’m conscious there are people going through a lot worse, so don’t want to sound over dramatic at all.

I think seeing dad vulnerable is the first time it’s really hit me that this is reality as of now. I just feel for him and don’t want him in pain (inevitable as it is).

On precautions you’re right - we can only do our part. I will be there when he needs.

My company today announced a huge restructure and said that everyone is at risk - we only moved into our new home at Christmas and i haven’t built up my savings just yet to cushion us. Also hit me because assuming financial responsibility for parents, and my sister as well as my own home. My wife and I were hoping to try for a family soon too. But I think there’s just too much going on, and too much risk. So I feel that guilt of disappointing her also. I do know this is life, and life is out of our control. I just pray for a break and keep my job, and see my family healthy and happy.

I’ve asked mum to look into carer’s allowance to help themselves too. Just want to make sure they’re ok and taken care of.

Thank you for being so wise and sharing your own story. I wasn’t expecting to share so much on this forum - it’s kind of my only out at the moment.

To all who have read, liked and responded - thank you. I won’t lie, I’ve had some pretty dark days this week and have had some difficult thoughts to try and escape, but this simple forum has helped me process and feel listened to.

I hope one day to repay somehow.

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Dad can apply for PIP also I applied as soon as I had started chemo. There was a back log of 12 weeks so the sooner you get the claim in the better.

If he is working check to see if he gets sick pay

When your going through as a family a life changing illness there is no check list to who suffers more than the other like the illness itself it’s very individual your not dramatic just coping just like all of us.

Take a breath and make a list of the important financials for now and how they will be managed.

You have a lot of juggling thoughts at the moment and they are overwhelming talk to your wife about babies I’m sure she will understand that maybe the time isn’t right. It’s really important to keep communication open because what we think people are thinking isn’t always what they are thinking.

Remember if you become sick you won’t be able to look after those you love, so take care of you also.

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Hello,

I’ll make sure to pass this info along - thank you so much.

Will do - thank you again.

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Hi @MazB,

I’m so sorry to read of what a difficult time you’ve been having recently and I’m pleased you’ve been able to find somewhere to share what you’ve been going through. I just wanted to re-iterate that our Support Team are here for you, so please do reach out to us when/if you feel ready to (0808 2080 888). I’ve sent you a direct message, too.

Best wishes,
Tanya.

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Hi @MazB ,

You are not alone.

My dad has also just recently been diagnosed with blood cancer but we do not know exactly what we are facing just yet.

A lot of the feelings and thoughts you have been having I have been having too. It has been very hard witnessing him deteriorite. He is still very able but has lost a lot of weight and has definitely slowed down.
Like you, I want to avoid facing him as everytime I do it just reminds me that he is ill. I push myself to see him though as I have no idea how long we have and I know I would feel even worse if I did not try to get a grip and get on with it for his sake.

One of my dads symptoms is severe itching and it has now started to affect him mentally as well as physically. It breaks my heart to see him suffering so much when he has never been ill in his life.

I know I need to keep it together for both of my parents but I also worry that I don’t have it in me and that my own emotions are going to overwhelm me to the point where I am just a complete mess and no good to anyone.

My parents have always been the strong ones, the ones I depended on. I feel I now owe it to them to be strong and positive and that is the internal battle I am having at the moment. At times I feel I have got this and at other times I just want to crawl into a ball and pretend it is not happening.

I am so glad that I have found this forum. I have been able to realise that the dark thoughts and overwhelming emotions are normal and it is not just me being weak.

I really feel I can take strength from others on here and know that If I need to chat there will be someone there to listen.

Big Hugs
Sue M

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Hi Sue,

If I’ve learned anything over the past 10 days it’s don’t stop talking and lean into your emotions.

I’m so sorry you’re also going through this. I really hope that your dad will be ok, and you and the rest of your family are coping the best you can.

This forum is filled with such amazing souls who have been helping me manage my thoughts and process my feelings, and I encourage you to do the same.

Like you said - you’re not alone. If you want to chat, I’m here.

Thinking of you x

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Thanks @MazB,

I am also sorry you are all going through this and I hope your dad is okay too.

I am also happy to chat if you need x

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Hi Sue,

Sometimes you can’t explain these things in life.

I’ve had a really hard week. At work and with dad, it all just seems a bit much you know?

I just keep telling myself that better days are coming, and I believe you can too.

Some days will be better than others. Some days you’ll want to cry, scream. Other days you’ll feel weirdly productive and optimistic - it’s ok to feel all of it.

Dad is in hospital as we speak receiving a platelet transfusion before beginning chemotherapy tomorrow. The doctor gave him 65% chance survival after the stem cell transplant (if chemo goes to plan).

Am being as strong as I can with everything going on. Without being religious or spiritual I believe the universe puts these tests in our way to prove we can do it.

You can do it. X

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@MazB and @SueM you can definitely do it, especially with your forum family around you.
Being as strong as you can and keeping posting sounds good to me.

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Hi @MazB,

It is good to hear you being so positive despite the week you have had.

We have to believe that things will get better, but I know how easy it is for the dark thoughts to try and creap back in. I constantly have conversations with myself, where I am trying to reinforce the positives to push the negatives out of my mind.

I hope you dad responds well to his treatment and I will be thinking of you and your family as he begins this part of the journey.

Please keep me posted on how he is doing.

Stay Strong x

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Good morning @MazB
I just wanted to check in, see how you are, and to let you know we’re all thinking of you. Hopefully you’re okay.
How did your Dad’s chemo go? How are the rest of the family too?
Please don’t forget we are here if you want to speak to someone, either this Forum or call the support line.

Take care, Heidi.

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