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AIBU?

To ask someone to give it to me straight RE cancer?

53 replies

RoyalChocolat · 01/11/2018 19:58

I'll try to make it short.
2 weeks ago my Mum was taken to hospital with stroke symptoms.
It turned out she has metastatic lung cancer, with tumours on her adrenal glands and at least 10 tumours in her brain.
The doctors keep fobbing us off - they have to wait for the results of the biposy, they could not perfom the biopsy, they cannot set a date for another biopsy... They are very evasive when asked if / when she can come home.
I have this horrible gut feeling that they know something that they don't want to tell us.
I am seven months pregnant with 3 DCs at home and I cannot visit her often (it is a long, expensive commute to her hospital and my maternity leave has not started yet).
AIBU to want to be told about her prognosis so that I can drop everything if she only has a few weeks left?

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britnay · 01/11/2018 19:59

I would say exactly that to them.

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Babyroobs · 01/11/2018 20:01

YANBU. Brain metastases can be controlled with Radiotherapy and steroids but the outlook wont be good if there are multiple brain metastases. Maybe the biopsy would be risky and would not alter any treatment. There may be a risk of a bleed.

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53rdWay · 01/11/2018 20:03

YANBU and I’m so sorry.

Is it possible that your mother does know more details about her prognosis and has asked the doctors not to relay the information to you?

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recklessgran · 01/11/2018 20:04

Has she had any scans OP? Could you ask for a meeting with her Consultant? How is your mum in herself? By that I mean is she aware and able to communicate? I would definitely insist on a meeting with her team to discuss her management. Have you asked on the ward? Good luck OP. It's so hard but you know you need to look after yourself too.

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MorningsEleven · 01/11/2018 20:05

Flowers I'm no expert but I suspect you're looking at palliative care. So sorry.

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Babyroobs · 01/11/2018 20:06

Does your mum have a Nurse specialist / key worker allocated to her that you could approach for more information ?

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RoyalChocolat · 01/11/2018 20:06

britnay my brother has asked them but they retreat behind patient confidentiality.

53rdWay I have thought about it but I doubt it - she was complaining about how little they are telling her earlier today, and I doubt she would be making up such elaborate lies.

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HollowTalk · 01/11/2018 20:06

You poor thing and your poor mum, too. Are you able to take immediate leave? Realistically she is going to need your support now.

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DanglyBangly · 01/11/2018 20:07

I would perhaps pick the most approachable of the doctors and take them aside for a quiet word and tell them what you’ve said here.

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Differentcorner · 01/11/2018 20:07

I’m so very sorry to read your post. It sounds as though the cancer is already very advanced and that treatment would be aimed at providing the best quality of life and giving consideration to the balance of benefit versus burden of further treatment. I don’t know what your relationship is like with her, but if you can, try and find out what her wishes and preferences are if she can express them. You all need to know what you’re dealing with, especially with coming home for example is that where she would want to be if it were the end of her life? What sort of support do you have or need to be able to do that? I would say that a good person to approach would be the lung cancer nurse specialist and go from there, otherwise you can try asking to speak to the consultant . As long as your mum agrees for them to talk openly with you I think you need to be as frank as you can. This must be so tough for you x

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MakeItRain · 01/11/2018 20:08

I don't know if this is the norm but I found the nurses I spoke to were more direct than the doctors. The week my dad died I still had a doctor telling me "we can't say, it could be weeks, it could be months, everyone is different". (I'm not really criticising, because the care he got was excellent.) I asked a nurse the same question on the same day who said she thought he had "days". I was shocked and upset but she was right and in a way it really helped me to hear it.
Mind you this was in a hospice at the end of his care so maybe it was easier to predict.
The trouble is it's true that everyone is "different" but I understand that feeling of wanting to know the reality of the situation.
Flowers for you and your mum, it's such a difficult time.

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mumto2babyboys · 01/11/2018 20:09

Find out who her consultant is and call his secretary or try to get the consultant to call you and update you

Secretary should be able to relay back to you what's in her file if you explain you are family

Contact Macmillan also and try to get something in place

I would take early maternity ASAP

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Justmemyselfandi999 · 01/11/2018 20:09

I would be asking for the grading of the primary and metastasis. I don't want to worry you but it doesn't sound promising. My darling Mum was diagnosed with a grade 3 lung cancer and secondaries in lymph nodes, she died 4 weeks after first diagnosis. I hope the outlook is more positive for your family.

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RoyalChocolat · 01/11/2018 20:10

recklessgran she has had several scans and an MRI. She is on medication that relieves the brain symptoms (at least temporarily) so she is fully aware and able to communicate.
If there is nothing they can do I want to get her out so that she can be more comfortable.

Babyroobs we are in France (Mum is French) and I am not really familiar with the system.

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FrowningFlamingo · 01/11/2018 20:12

Secretary should be able to relay back to you what's in her file if you explain you are family
Not at all true. I would suggest you ask if there's a time you can come to talk to a doctor with your mum, together. Without her consent they can't tell you anything.

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mumto2babyboys · 01/11/2018 20:13

Hasn't the mother given consent she said she can communicate

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RoyalChocolat · 01/11/2018 20:13

Justmemyselfandi999 if I have understood it right, they cannot give the grading without a biopsy, and the lung biopsy failed. Mum doesn't want a brain biopsy and apparently the adrenal glands are very difficult to reach.

I am going to see her on Saturday. I will try to have a word with the nurses.
Thanks everyone. If the prognosis is bad I'd rather know.

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Mummyshark2018 · 01/11/2018 20:14

I re-iterate about asking if your mum has a Macmillan nurse. IME they are fab and know how to explain things to you in a way that non medical people can understand. I really hope all goes well. If I were you I would try and line up local support- friends, family, paid childcare in case you need to come home. Also considering you are expecting do you need to consider seeing her before you're too far ok to travel? Good luck xx

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VictoriaBun · 01/11/2018 20:16

You could ask her if she would give consent for you to have details. My mum was diagnosed with stage4 bowel cancer but did not want to know outcome but have her consent for me to ask details. I was told probably 3-6 months, but she died after 11 weeks. It was quite hard trying to keep upbeat with her but knowing likely outcome.

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BarneyBarnacle · 01/11/2018 20:18

I agree with asking the nurses instead of doctors. When my dad was dying the doctors wouldn’t commit to any length of time at all. Asked a lovely nurse who said they think days rather than weeks. They were correct.
Also my mother died of extensive small cell lung cancer (they don’t grade small cell in the same way and extensive just means it had spread) and just like a previous poster she died within 4 weeks. The doctors never gave us any indication it would be that soon. Only from googling did I realise how quickly it could be and I prepared myself from that alone.

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RoyalChocolat · 01/11/2018 20:19

Another question : what do I tell the DCs?
I am trying to answer their questions as they come, according to their ages (11, 9 and 6), but what do I tell them if they ask "is Granny going to die?"

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mumto2babyboys · 01/11/2018 20:20

Sorry to say but you should take early maternity and go now.

Macmillan can help provide care for her overnight in her home but only downstairs usually, so a spare room or living room will have to be turned into her room.

Hope you can have a lovely Christmas with her and she isn't in too much pain. 

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mumto2babyboys · 01/11/2018 20:21

Don't tell them yet. They will just worry. Tell them when it is very close to the end

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Justmemyselfandi999 · 01/11/2018 20:25

My Mum didn't have any biopsies, her gradings were diagnosed from scans only. In your position I would be spending as much time as possible with her. We were told up to 6 months from diagnosis, that sadly was very optimistic. I had children 5 and 6 years old, I was brutally honest with them from the outset. I believe personally it's best not to sugarcoat anything, then adults have no need to hide emotions and children won't have any regrets later in life if they've had the opportunity to say goodbyes.

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mumto2babyboys · 01/11/2018 20:29

Something that helps with the end, is asking her about all her favourite things now and make a list of it all.

Then later on you can play her favourite songs to her and talk about things she loves and places she went and people she grew up with.

hearing is one of the last senses to go and she will still be able to hear you even if she is in a morphine coma, it will bring her comfort to heat about her favourite things again.

Macmillan can explain it to your children for you as that's part of their extra training. But I wouldn't worry your kids until it's closer to the end

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