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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:
mugglingalong · 02/05/2015 07:12

Sorry the post at 6:52- too slow typing. I would contact out of hours GP for him now if he is in that much pain.

daisydotandgertie · 02/05/2015 07:21

I am so very sorry about your brother. The shock and distress is like nothing on earth. My DH died of advanced stomach and liver cancer aged 43 not so long ago and like your brother, it came out of the blue.

To help your brother, you need to speak to a GP. They refer to the hospice etc. Can you get an emergency appointment today? Ring the surgery first thing and insist on seeing a doctor today if you can. Your brother should have his pain under control at the very least and the GP is the starting point for that. McMillan will give you telephone advice, but for actual meds, you need the GP and a referral to a hospice.

If you can't get an appointment, you should take him to A&E, he really needs to get his pain under control.

Have they given him any treatment options? Are they planning any chemo?

Think about whether it would be better for everyone to have your brother stay at your house, or for you to go to his. You'll also need to visit the doctor to ask to be signed off. I wish I'd done that, at least for a while.

whatisforteamum · 02/05/2015 08:07

Op i am so sorry about your DB he is so young and this is all so sudden.I have rung macmillan about my parents and they can give financial practical and medical advice.Do you have any siblings or family that can help out so that you dont overdo it ?My heart goes out to you having heard this kind of news twice albiet from older relatives Flowers

therealsquireofwideacre · 02/05/2015 08:08

Oh Daisy I am so sorry for your loss and that you have felt this too. I am so sorry for everyone here who has lost their beloved loved ones.

I hadn't considered that Brian could have his care transferred. He is currently based in London and we are going back there for a PET scan on Tuesday. The MDT meeting is on Tuesday too.

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therealsquireofwideacre · 02/05/2015 08:09

Thank you whatisfortea, I am overwhelmed at how kind you all are.

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ajandjjmum · 02/05/2015 08:20

I am so sorry you are going through this, and that Brian is in pain. My little (!) DB had a potentially life threatening condition a couple of years ago, and I know how much it floored me - although it was sorted. I really hope you are able to access the support you need - and any boss with a heart would let you do what you need to now, without it affecting your employment.

whatisforteamum · 02/05/2015 08:20

I meant to say cancer is now classed as a disability so you cant be sacked for caring for someone with it (least of your worries i know ).Join us on macmillan website where everyone is a patient or relative caring for someone and knows the devastation this bloody awful disease causes :(

DrownedGirl · 02/05/2015 08:25

If you work for a council, there won't be a problem with time off. But best to get your gp to sign you off with stress, you shouldn't need to face reduced pay. A good gp will do this for you.

daisydotandgertie · 02/05/2015 08:32

Squirrel - ring your own GP and get your brother seen as a visitor this weekend. It's quite normal and they should be helpful - explain the problem to the receptionist and insist.

Don't try doing this on your own - the GP is there for a reason. Use them.

Cancer pain needs managing. What pain meds is he on at the moment?

Procrastinatingpeacock · 02/05/2015 20:12

So sorry for you OP. My mum is in the end stages of bowel cancer, we have had time to come to terms with it though so don't have to deal with the shock of the diagnosis at the same time. There is an awful lot of help there for your brother but sometimes you have to really push for it. Although my mum wishes to die at home we have found our local hospice to be a great source of help, the doctors there have so much expertise and have been very accessible. Maybe see if there is something similar in your area? Thinking of you and your lovely brother Brian.

therealsquireofwideacre · 02/05/2015 23:00

Thank you lovely Peacock and I am so sorry that you are walking this path with your Mum. How is she today?

I'm going up to London with Brian on Monday for his PET scan on Tuesday and want him to come back with me for his care at some point afterwards, but it depends on how easily care can be transferred and whether he wants to do it. In London they seem to have all the most up to date equipment and the care team have been brilliant so far he says. My bit of the UK has a less wonderful hospital and maybe it wouldn't be so good in terms of services for him here, but all his family is here. It's all very uncertain.

I really do appreciate all your wonderful posts, the kindness of strangers is keeping me going. Thank you.

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Coldcabbagestew · 03/05/2015 21:29

Squire - have they mentioned anything about treatment yet or are they waiting for the PET result? Do they think he is strong enough for chemo?

Really sorry to hear your news.

Coldcabbagestew · 03/05/2015 21:30

PS care can be very easily transferred in these situations.

therealsquireofwideacre · 04/05/2015 02:01

cabbage the MDT team meet on Tuesday so we will know more after that. Is it okay to carry on updating here?

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parsnipbob · 04/05/2015 06:28

Yes of course please do!!

PenguinPoser · 04/05/2015 13:02

Thinking of you squire Flowers

Stillyummy · 04/05/2015 13:30

It may be worth you seeing the Dr and getting some time off op. Your obviously going to be in shock and work is probably not the best place for you regardless of anything else. Flowers

minmooch · 04/05/2015 13:31

I can't read the whole thread as it is very close to home so I apologise if I repeat what others have said. I nursed my 18 year old son through his long fight with cancer. He died in a hospice last year aged 18. I have just nursed and lost my mum through her short fight with cancer a month ago. She died in hospital.

Hopefully after the MDT meeting you may have a rough timeline. With this in mind On a practical level you need to have lots of discussions with your brother with regards to his end of life care. Would he like, if possible, to see the end days at home or would he like to go to a hospice? If he wants to stay at home will he require a medical bed? Does he have a downstairs room that could be turned into a bedroom? Does he have a downstairs bathroom? May he need a stair lift to help him? He will be given a palliative care nurse who should be able to help and advise you on the above.

Does he need to see a solicitor to put his affairs in order. I know that sounds strange but lots of people worry about leaving things in a mess. Would he like to talk to you about funeral arrangements. These are desperately hard discussions to be had but they will undoubtedly be going through his head and you can help share that burden with him. Are you his next of kin? You need to establish who is so that you can make any necessary decisions on his behalf.

At home get lots of easy food in that dies not require much preparation. If he is able to eat then get in treats that he likes.

Prepare a folder that all his medical notes can go into, emergency numbers, appointments so that everything is in one place and easy to put your hands on.

Talk to him about how much care he wants from you/you are able to give him. He might not wNt you to help him bathing, for instance, but maybe ok to help get him dressed. If you can have an honest conversation then it does make it easier for you to help and for him to accept your help.

Talk, talk, talk. Laugh and cry with him. Share memories, say everything you want to say to him.

During the last few days with both my son and my mum we wanted them to be surrounded by love and laughter. We wanted them to hear and experience laughter right to the end. My mum loved her radio so we had it playing all the time for her. When sings came on we knew she loved we would sing along to them.

My son was an intellect and some of his teachers came in to see him in the last few days to talk normal school boy subjects with him. He also loved his food and was able to eat and enjoy food right up to two days before he died. He ate all the things he loved - treacle sponge pudding, chocolate cake, pasta. Through most of his treatment he couldn't eat so this was something he could enjoy at the end.

Look upon this as an honour - to look after a loved one at the end of their life. It will see you through some terrible times to know you did what you could for him.

Crying now so will stop. I hope that your brother is able to receive treatment that gives him time but is also gentle on him.

ladylinda52 · 05/05/2015 10:12

What a wonderful supporting post, Min. You are a very special person. No advice, squire, just admiration for you as you try to support your wonderful brother .

Heebiejeebie · 05/05/2015 18:59

Oh minmooch, thank you for sharing such precious insights.

therealsquireofwideacre · 05/05/2015 21:43

Min thank you for taking the time to write such supportive words when it must have been so harrowing for you to go through all that and then generously share your advice and experience here. I am so grateful and privileged that you did that, thank you.

I have been in hospital all day with Brian while he had PET and MRI scans, and he has volunteered to take part in research so there were extra scans too. We have started talking about some of the things you mentioned and I want to take him back with me once we have the results from the MDT meeting so that his care can - hopefully - be as beautiful as the care you gave your beloved son and mother.

I am trying so hard to get it right for Brian. I feel like I'm standing on a cliff edge, the fear and anxiety are agonising. I suddenly have eyes open to the people in waiting rooms going through the same pain. What an awakening. It feels in some ways like a gift but what a crucifying journey this is. I am so very honoured Min that you cared enough to share. Thank you, and thank you all you kind, generous people that are listening here.

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therealsquireofwideacre · 05/05/2015 21:53

I know I'm going to keep coming back and rereading your advice Min, so many things I wouldn't have thought of. Thank you.

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Hellenbach · 05/05/2015 22:12

Oh Minmooch I am so sorry to hear about your mother. I remember you from previous cancer threads. What a generous and caring person you are.

cleanmachine · 05/05/2015 22:25

Oh min I'm so sorry for your loss, and to everyone else on this thread.

Squire - I'm thinking of you and praying for both you and the lovely Brian. Keep posting if it helps you. Both you and your brother sound remarkable.

whatisforteamum · 06/05/2015 07:44

minmooch so sorry for your losses no idea how i would cope if it were one of my dcs as its hard enough being there for mum and Dad i really hate cancer and all its side effects.xFlowers