Hey I'm new: Hey, I'm new on here, my... - Leukaemia CARE

Leukaemia CARE
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Hey I'm new

Fit440
Fit440
16 Replies

Hey, I'm new on here, my husband has leaukemia and Iam looking for people to chat to who understand

16 Replies
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LCNurse
LCNurseLeukaemiaCARE Nurse

Hi Fit440

Thank you for joining the leukaemia care forum. there are other on the forum who are caring for their relative with leukaemia so please message them. Alternatively , if you want to speak to a nurse for support - please ring our careline on 08088010444 we are here to support you.

we also have booklets that may help you please visit our website leukaemiacare.org.uk

i can also send these to you in the post.

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Kwenda

There are multiple types of leukaemia and they are treated differently and each has it's own forum and help groups and associations.

Do you know what type of leukaemia..??

Then we can point you to a more detailed web page.

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Fit440
Fit440
in reply to Kwenda

Yes he has T cell accute lymphoblastic TALL

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Kwenda

WOW That is very very rare type and not one that I am fully up to date with.

This organisation does have a special web page for it however and they have a free help line, plus literature, and are well known to be helpful.

See this web page.

bloodwise.org.uk/t-cell-acu...

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Fit440

Thank you, from what I understand it is more common in children and rare in adults

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Christiana_

I had acute lymphoblastic lymphoma, T cell. I was diagnosed almost 4 years ago... I'm happy to chat if you want it?

3 likes
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Kathp

Hi and welcome - am sure you will be pleased you found this forum - there is so much support on here- sorry I cannot help with your husbands particular type but am happy to chat - I have chronic lymphocytic leukaemia x

2 likes
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peterb2016

Welcome to the forum in general and LeukaemiaCare in particular.

A diagnosis of cancer is a great shock to both the patient and those that care for and about them, so I can understand your need to find someone in similar circumstances to talk to.

For specific advice about your husband's condition, his health care team and specialist nurse may be able to help, and point you in the direction of a local support group, if one exists.

The LeaukaemiaCare Caroline, mentioned earlier, is manned by both LC staff and volunteers 24 hours a day, 7 days a week, most of the volunteers have been either patients or caters, so if you just want to chat, or get something off your mind on a one to one basis, it's there for you. There is also a nurse specialist you can speak with For genaeral advice and LeaukaemiaCare can also provide information booklets.

But be assured you are not alone, even if it sometimes feels like it. Help, chat or help is only a phone call away.

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Fit440

Thank you all for your comments, my husband was diagnosed completely out of the blue back in August, the last few months have been crazy, getting to and from hospital, sorting finances, staying strong, juggling home life, seeing him suffer the side effects of chemo... We are nearing the end of 3 phases of chemo, he is in remission but waiting for a bone marrow transplant in January.

My struggles at the moment are keeping my thoughts present in each day. The future is unknown and I can't prepare for how it will go. I am not in control!

Any tips for taking one day at a time when all you want is to know is how things will be in six months, a year, ten years???

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Dunny1306
Dunny1306
in reply to Fit440

Hi my wife has ALL,we've just finished phase 1 and doing ok at home resting at the minute .We are trying to take each day as it comes but what a rollercoaster,just looking to have a little good news.How old is your husband,my wife is 46.

1 like
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Fit440
Fit440
in reply to Dunny1306

Hi, he is 52, just had his bone marrow transplant, he is home now, doing really well but very weak and tired!

It definitely is a roller coaster!!

It totally messes with your mind! Good days and bad days!

How is your wife coping?

How are you coping?

Do you have children?

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Dunny1306
Dunny1306
in reply to Fit440

Wife coping OK it's just something different every day ,got to go back for a brain scan now ,then we go onto phase 2.Myself not too good doing part time at work and looking after our son who is 13 ,it's the quiet moments when I struggle .

We are looking at the positive things ,my wife was not ill before diagnosis just a few lumps here n their no weight loss either or pain and then bang you got ALL in hospital the next day.Was it the same for you.?

Glad your husband is doing well after the bone marrow,was this done under strict conditions?

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Dunny1306
Dunny1306
in reply to Dunny1306

Hi again,

Are you on UKALL14 treatment?

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peterb2016

Being out of control can be hard to come to terms with, and maybe worse for the partner than the patient. Living one day at a time does take a 'mindset' adjustment, more a case of 'live for today' or the now. So spend some time doing those things that you had planned for in the future - if you had a special holiday planned, or something else you had planned to do, see if you can do that now. Have days out together, not only will they help take your mind off things, they will build up memories for both of you, whatever the eventual outcome may be.

It is a good thing anyway, because none of us know what the future holds, but a cancer (or any other serious illness) diagnosis is a jolt, and a wake -up call that time is passing.

But bear in mind that the success rate for blood cancer treatment in general is improving all the time, so stay positive and enjoy life as much as you can!

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Cyprusfan

Hi Fit440

How is your husband doing now.

Hayley x

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Cyprusfan

Hi Fit440

Are you still on here

Hayley

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