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To feel like I need to ask some very difficult questions about my mums cqncer

(32 Posts)
Beeswax2017 Fri 23-Oct-15 15:49:58

Message withdrawn at poster's request.

WhyCantIuseTheNameIWant Fri 23-Oct-15 15:58:26

I know you have a million questions, but this really needs to be about your mum. Sorry, that sounds harsh.

Your mum needs to chat with all her treatment providers, preferably with a Macmillan nurse present. And you.

She can then decide on her treatment, if any. The chemo/radio will be making her unwell, so if there is no benefit she may decide she wants to spend the remainder of her life feeling a bit better!

My uncle was killed by lung cancer too.

Beeswax2017 Fri 23-Oct-15 16:03:36

Message withdrawn at poster's request.

TheFuzz Fri 23-Oct-15 16:06:48

With Stage 4 lung cancer there isn't much the docs can do other than make the patient as comfortable as possible. Chemo and radiotherapy is only an option if the patient is well enough.

Been through this with a relative.

thesandwich Fri 23-Oct-15 16:07:32

Would it be worth speaking to a Macmillan nurse as to how you can support? And to get support for you too? Is there a hospice near you? They offer brilliant support for people with inoperable conditions.

Sparklingbrook Fri 23-Oct-15 17:15:22

I think contacting the local hospice is an excellent idea, you can often self refer. Our local one organises counselling sessions for both carers and patients, and also complementary therapies.

it may help you to feel a little less lost, they have a lot of experience in helping people through this.

Junosmum Fri 23-Oct-15 19:03:33

Sorry you are going through this. We had this with OHs gran earlier this year.

She was put on chemo to give her a bit longer but it made no difference to her tumors (primary bowel with kidney, liver, bone and lung mets).

The chemo was 'last chance saloon' after that she got very ill very quickly. We tried to make the most of the time with her, we did pretty well - got married and got pregnant! She was aware of both and died peacefully in her sleep 2 weeks after I told her I was pregnant.

It was very very hard for everyone to accept that this was it, that there was no 'plan b', that there was nothing left to try. But you have to make the best of the time you have left with her - gran had maybe 8 good weeks and then 12 in bed before she went. She was barely with it for the last 6 weeks.

All the best. (and a very unmumsnetty hug)

WoahBodyforrrrm Fri 23-Oct-15 19:15:19

I'm so sorry to hear about your poor mum, it must be so so awful for you all. I don't really have any advice but will keep you and your family in my thoughts and prayers flowers

Minisoksmakehardwork Fri 23-Oct-15 19:21:07

A friend is going through similar with her mum. While it's easy to say it's all about your mum and not you, I know exactly what you mean. Someone has to remove their head from the sand and face the reality of the situation. It is understandable that your mum doesn't want to acknowledge that her time is more greatly limited than she wants, so is there any way your mum would agree to her doctors speaking to you and you not telling her what is going to happen (if you feel strong enough?).

Otherwise it's making sure the practicalities are taken care of - funeral, will, that kind of thing. Again, harsh realities that your mum likely won't want to face. But does she also want to leave you (and any siblings) grieving and trying to organise all that from scratch as well?

A gentle talk is needed. But it's going to be emotional on all sides and you need to be prepared for that as well.

StepAwayFromTheEcclesCakes Fri 23-Oct-15 19:26:17

yes seek support from macmillan nurses if possible. You need to know what you are facing. other than that all you can realistically do is be led by your mum as to her wishes. have a weep and then slap yourself and make a list of everything you need to discuss, face up to. I tis the hardest thing you will ever face but you will find the resilience from somewhere to support your mum. You need to have all those difficult discussions about her wishes re : funeral, personal belongings etc etc. it is heartbreaking but has to be faced full on so that you have no regrets when the worst happens. sorry for being so blunt but I have just been through it with my mum and although being with her through her last weeks and at her death was the hardest thing I have ever done I am so glad now, a few months on that I am dealing with honest grief at her not being here any more and not additional guilt at things I wish I had / had not done. I listened to her when she was still able to tell me what she wished when my brothers couldn't, they just brushed it of with platitudes and denial. It was awful but she knew she could discuss with me what she wanted and I did what she asked. as I said I can grieve with a clear conscience and that for me is so helpful. sorry for the essay, its all a bit raw still. bless you and take care of yourself as you go through it, find support from anywhere you can flowers

Babyroobs Fri 23-Oct-15 19:28:39

I'm sorry to read what you and your mum are going through, it must be very hard .I guess they mean that there is nothing else that they can offer except to treat any symptoms as they arise. How well patients do after chemo cannot always be predicted, some may plateau and remain reasonably well for some time and others may deteriorate quickly. There are so many factors that can affect her prognosis. I would try to get your mum to agree for you to speak to the Drs if it will help your anxiety and give you some answers. If she does not want to know anything in terms of her prognosis then you can still respect her wish not to know.

Ludoole Fri 23-Oct-15 19:33:36

Livin I felt very much like you do now when dh's chemo was halted due to it not working.
This last week we have asked for hospice at home mainly for painrelief and they have been great. They are supporting our whole family and i am able to ask questions about anything.
The nurses we have had have been brilliant in getting dh what he needs as he needs it. Maybe its worth looking into something similar.

Babbafish Fri 23-Oct-15 19:48:28

I'm sorry to hear this .... I lost mum last year aged 68 to lung cancer. 2 weeks before the dx she was in Mexico dancing on the tables ( literally .... She was a right one lol) then came home felt like she'd caught a bug. Was dehydrated and taken into hospital. They did chest X-Ray and bronchoscopy, MRI. Found Small Cell Ling Cancer with Liver Mets stage 4. Her voice went funny .... She was still really active but deteriorating 6 weeks from that diagnosis my mum died. No chance for chemo..... Nothing!
Please plan, talk, hug, kiss, hold hands, smell.......
It's not great news but enjoy every single minute xxxx

yeOldeTrout Fri 23-Oct-15 19:59:24

But now, we are plunged back into uncertainty and I cant cope.

We all die eventually it's just that it will come sooner for your mum.
Have you tried making memory books, ways to record her life & memories to share with others? You could do recordings even.

If possible, talk with your mum about what she wants to happen.

This guy, Atul Gawande, has some good advice for people facing mortality & their loved ones.

wheat32 Fri 23-Oct-15 20:01:28

So sorry to hear about your Mum. Does your hospital have a specialist lung cancer nurse who works with her consultant that you could talk to? They may have discussed your Mum at a team meeting and may be able to give more specific advice about your mum's condition, the sort of thing, it sounds, you are after. They can also put you in contact with your local hospice if you wish and support you long term. Take care of yourself.

MarmaladeBasedProtectionRacket Fri 23-Oct-15 20:03:37

So sorry to hear about this. Been through this twice, though other cancers, not lung. I also work in healthcare but am not a cancer expert.

It sounds like they are moving towards treating symptoms as & when they may arise eg pain, nausea etc. Palliative care teams, hospice, MacMillan nurses etc may be involved in that if the GP needs extra input & advice. So stopping chemo doesn't mean nothing can or will be done to help her, just that active treatment aimed at curing or controlling the disease itself is no longer appropriate. That can be hard to accept.

If she doesn't want her doctors to talk to you, then they will have to respect confidentiality. They may be able to give some information in very general terms only - eg what often happens in patients with her sort of problems. However, if you live locally and are very involved in hands on care they may over time get her to agree that you need some information about her case and some idea of what to expect in order to plan to give her the support she needs. I suspect after the initial shock of being told she's stopping chemo has worn off she may change her mind about you talking to her care team. If she's got a GP she trusts, she may be OK with you having a chat with the GP or going with her to appointments.

Some people stick their heads in the sand and won't acknowledge the situation at all, that's tough for families. Depending on where she lives, the cancer team may have psychologists available to see her if necessary, and also family members.

Bambambini Fri 23-Oct-15 20:16:07

My mum was stage 4 small cell lung cancer. The chemo can be palliative to make things easier. My mum had one round and it helped her breathing, she was able to put aside the oxygen she was relying on.

I know it's about her but I think it would help you to know - to prepare. Not knowing anything must be very difficult. Will she not let you talk to her doctor on your own?

So sorry you and your mum are going through this. Such a horrible, emotional roller coaster ride which you know isn't going to end well. We had lots of laughs, cuddles and love along the way - there were positives in amongst the tears, fear and pain. Just make the most of the time you have.

hiddenhome2 Fri 23-Oct-15 21:45:08

Once a person is no longer able to have active treatment for their cancer, the focus then shifts towards keeping them comfortable and pain free. Patients
usually deal with it better than their relatives and relatives are often stressed and unhappy about the whole process due to grief and fear of the unknown. This is a natural reaction.

The patient usually spends more and more time sleeping as they can feel weak and the side effects from the painkillers cause tiredness. Many people can develop infections which they'll still be given antibiotics for to maintain comfort.

People often don't want to eat or drink a lot as it can lead to nausea. There are medications which will relieve it though. Patients will need nursing towards their end of life to ensure they're kept comfortable. People can remain at home with nurses going in, or into a hospice. Everyone has different needs and preferences.

I know it must be difficult for you. Try to accept what your mum wants though. She'll be having to come to terms with it herself and go through her own grief reaction. Try to talk to her about how she wants things to be done as she goes through these last stages. Where would she like to be cared for etc.

Strangertides1 Fri 23-Oct-15 21:56:32

Am so sorry you are going through this. My own mother has ovarian cancer, after 3 rounds of chemo over 2 years we were told in July no more chemo just pain meds. We were shocked and mad at the doctors that they had the right to decided this! I cried for days, so sad my little boys and my unborn daughter won't know there nanny. We were told it was because the chemo was doing more harm than good, it a major attack on the body and sometimes people can live longer without it. If you need answers and a plan of action I would recommend speaking to the Mcmillian nurse given to your mother, they are very good and understand that family also need help. I also go to my mums appointments at St johns, she is ok at the moment but it's still useful to understand what exactly they do.

RoisinIwanttofightyourfather Fri 23-Oct-15 23:22:57

My Mum died from lung cancer. So sorry that your Mum is going through this.
From start of the disease to death is usually a year. My Mum wasn't offered chemo, she wasn't suitable, but she was offered palliative care. She spent her last few weeks in the Hospice who were wonderful to Mum and the family too.
From now on its just about making sure you all know her wishes and supporting her and your family.

stopfuckingshoutingatme Sat 24-Oct-15 00:06:49

ah OP, I am sorry to read

and I understand you want to know and support her

I think (without being to fast to diagnose her) its helpful to

(a) write down all your questions, every one and write down the answers
(b) research hospices for when the time comes
(c) I do agree with people that say to try and be at peace with her eventual passing and "be"

we are all going to die, and both my grannies passed very peacefully. Having you there, peaceful, holding her hand. I don't know I just think that when you hear the news there are things you can do to make calm as it can be

I am just being honest and I am sure you feel shocked and maybe not ready for this yet xxxxx

Shakshuka Sat 24-Oct-15 02:31:50

Ask them about opdivo, it's a new medication for lung cancer once chemo has stopped working. It's had good results in some people. I'm not sure it's available on the nhs, you may need to get it privately.

I'm sorry you're going through this. I lost my dad to lung cancer just 4 weeks ago, it's pretty shit.

goldglittershitter Sat 24-Oct-15 09:49:27

Am so sorry to hear this, OP. I am going thru exactly this with my beloved Auntie n not coping too brilliantly so can only imagine how u must be feeling with it being ur mum.

I haven't any wise advice, but I hope things go as well as they can for u n ur mum flowers .

Beeswax2017 Sun 25-Oct-15 19:16:28

Message withdrawn at poster's request.

Shakshuka Mon 26-Oct-15 01:17:45

The other thing is to ask about any clinical trials. There are quite a few new drugs in the pipeline and there may be a clinical trial your mum could join.

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