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Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Life-limiting illness

please help re work and practical advice, my beautiful brother is dying

89 replies

therealsquireofwideacre · 02/05/2015 05:41

My darling, wonderful 40 year old brother has had a very sudden diagnosis of late stage bowel and liver cancer. It was a total bolt out of the blue and in the last 7 days we have gone from literally no idea there was anything wrong to being told he has very little time left. He lives 200 miles away from me and has no one to care for him. I need to be with him. I have no idea what to do about work - I need an open ended absence but realistically will I have to give notice? Can I just leave without working my notice out? He doesn't have that long. Forgive me for being stupid but I can't even breathe let alone think. Can anyone who has been through similar please hold my hand and give me some practical advice? What do I need to take with me, what do I need to do? This hurts so much.

OP posts:

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parsnipbob · 02/05/2015 05:51

Oh I am so sorry OP. Not been through similar (yet) but didn't want to read and run

Re: work, do you have a good relationship with your boss? How long have you worked there? I would say any decent workplace would understand and either give you extended (unpaid probably) leave or let you leave without working your notice. It depends on the type of environment.

PenguinPoser · 02/05/2015 05:53

I'm so sorry to read this how utterly awful for you and your family.

I don't have the answer I'm afraid - hope someone else does. Logic is telling me you need to go and be with your brother. I hope your employers are understanding. Either they could give you some compassionate leave which may or may not be paid, or your GP might give you some sick time. I know you're not technically sick but imo you would likely not be fit for work with this hanging over you. And I've had a sick note before for family stress/bereavement.

Depending on how your brother is you might need further help to care for him. There is lots available. Social services can provide care at very short notice. His GP can help with symptom management, and arrange district nurses to visit daily. Macmillan are also a great source of support if there's a Macmillan nurse in his area, again his GP might be able to sort it. They support the patient and family too. In terms of what you need to do - be there. Let others help you so you have as much quality time as possible with your brother.

parsnipbob · 02/05/2015 05:56

How is your brother feeling physically at the moment? When you say you had no idea there was anything wrong, had he been having symptoms? I haven't been through this myself as I say but have friends that have with parents and from what I recall they spoke to the doctors re: treatment to make patient more comfortable, and options on palliative care - eg, being treated at home, Macmillan nurses coming to the house. Are you able to speak to his doctor?

Once again I am so very sorry, I can feel the pain in your OP. I'm sure there will be plenty of posters along with similar experiences for better advice than I can give but I'm here for a hand hold.

therealsquireofwideacre · 02/05/2015 05:58

Thank you so much. I work in elderly care and have been there 10 months. I'm employed by the council. My brother and I are very close, I have to be there for him. My beautiful brother.

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parsnipbob · 02/05/2015 06:00

I would absolutely feel the same way and you must go. Is the earliest you will be able to speak to your employer Tuesday now or can you get hold of them over the weekend?

therealsquireofwideacre · 02/05/2015 06:01

Thank you parsnip, thank you for listening. He has stage 4 bowel cancer that has spread to his liver. He had some very vague IBS type symptoms over the last 18 months but nothing even remotely alarming. Emergency admission for sudden severe abdominal pain 5 days ago, immediate tests - now this. Devastation doesn't cover it.

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Baddz · 02/05/2015 06:04

I'm so very sorry.
I agree with pp that you need to with your brother.
Generally speaking local authorities have better HR depts than smaller companies so I would ask to speak to HR about open ended compassionate leave.
Wrt your brother he should be being offered a palliative care package - this can mean very different things.
It can mean carers coming in to his home each day if needed to going into a hospice for end of life care.
Some people have found Macmillna to be invaluable in these situations and they can help with the financial and legal side too.
He may be elligible for some benefits/reduction in bills.
Such a huge shock for you, just breathe and keep putting one foot in front of the other x

therealsquireofwideacre · 02/05/2015 06:04

Tuesday will be the earliest I can speak to HR. My brother is here with me this weekend, in a lot of pain, to say goodbye to my children. I want to travel back with him for his scan on Tuesday.

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parsnipbob · 02/05/2015 06:04

I adore my little brother too. I can't even begin to imagine how completely awful this is for you :(

therealsquireofwideacre · 02/05/2015 06:05

Writing it down is so bloody awful, he can't leave me, I can't bear it.

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therealsquireofwideacre · 02/05/2015 06:06

Sorry

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Baddz · 02/05/2015 06:07

Gosh, how awful.
He shouldn't be in a lot of pain! Has he got decent pain meds? He may need to contact his gp for pain relief once home.
If Tuesday is the earliest you speak to them, then Tuesday it is...I forgot about the bank hoLisa's.
My late aunt managed with carers for a while, but then it took more than one carer to lift etc and she kept having falls so she went to a nursing home and that's where she died.
Have you dint acted Macmillan? There is a helpline you could ring today x

parsnipbob · 02/05/2015 06:08

You must, must, must make sure you also have appropriate help and support for yourself. Macmillan do have a phone line for advice and help but they are only open Monday - Friday I believe. In the meantime if you need someone to sob to you could call the Samaritans.

How old are your DC?

Baddz · 02/05/2015 06:08

I can't imagine how I would feel if it were my little brother :(

therealsquireofwideacre · 02/05/2015 06:09

He is here, we talk and cry and the children are playing and it's all so normal and so awful.

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Baddz · 02/05/2015 06:09

Sorry about awful typing, been up a,lol night with a sick child...
Parsnip is spot on.
You need to look after yourself too x

therealsquireofwideacre · 02/05/2015 06:13

He found out 3 days ago, rang me the following day and came down yesterday. 3 weeks ago he last came to visit and he looked so well. Today he looks thin and his skin is tinged yellow, the difference is shocking.

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therealsquireofwideacre · 02/05/2015 06:14

Thank you Baddz I will contact Macmillan. I haven't had time to think yet. I need to get my act together, he needs me.

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therealsquireofwideacre · 02/05/2015 06:16

I'm sorry your lo is poorly Baddz

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therealsquireofwideacre · 02/05/2015 06:18

My dc are a variety of ages Parsnip, the littles don't understand thank goodness but the teens are beside themselves.

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Baddz · 02/05/2015 06:22

Thank you x uti so he is pretty miserable poor thing.
It's such early days for you...you must feel in daze ATM. It can be quite scary how quickly they go downhill.
I can tell you what happened with my aunt if it helps...
With my aunt, she started spending more and more time in bed. She stopped eating and didn't drink much. My sister and I went each day to make her some breakfast and try and get her to drink before she went back to bed (my cousin worked ft)
She got weaker and weaker and then needed help with basic personal care and she started falling when trying to go to the loo at night.
Eventually she got a proper hospital bed with guard rails, and a commode for use at night.
She also had px for a pain relief pump should it be needed (it wasn't) and she signed a DNR.
My aunt was 77 when she died and it hit me very very hard coming so soon after the death of my beloved dad.
But 40? That's just so cruel.
I wish I knew what to say x

Baddz · 02/05/2015 06:23

If your dc struggle afterwards, I recommend bereavement counselling...my youngest son had it after my dad died.
It really helped him.

parsnipbob · 02/05/2015 06:24

Who will stay with them while you are away taking care of your brother? Do you have a partner?

If you are feeling really horrendous (as you must be) you could also consider going to your GP for some anti depressants. I dont like to use them long term but if you get on with them they can be very good when you're dealing with a specific horrible thing and you just need something to get you through the day. Either way you do need support, you can't and shouldn't have to do this alone.

KnitFastDieWarm · 02/05/2015 06:33

How awful, I'm so sorry. What a terrible shock for you and your family. My best friend lost her mum far too young two years ago today to a similar shock cancer diagnosis, and it's so, so horrible and unfair when it happens.

Your love for your brother shines out of your posts. Whatever happens, he will know how much you adore him and that is a wonderful thing in amongst all the shock and hurt. To help someone face death with the love and support of those around them is one of the greatest gifts you can give another human being. You sound like a wonderful sister.

PunkrockerGirl · 02/05/2015 06:33

So sorry to hear this, it's terrible for you all
I went through similar with a family member and had to be off work to be with them and look after them. My GP was brilliant and signed me off work for as long as I needed, so maybe see your GP asap.
You must have support for yourself and Db should have adequate symptom control. Agree Macmillan are good . Also most hospices have excellent palliative care community nurses who would provide support for you and your db, this would need a GP referral.
I'm a palliative care nurse, OP so pleas feel free to pm me if you need any advice.

Sending you

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