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1

Hi everyone,

Hope your well.

Just looking for some advice really. My Dad passed away from cancer two months ago, I’ve lived at my parents house supporting them with my teenage daughter since last October.

My mother has just been diagnosed with a rare type of breast cancer and is currently booked in for a mastectomy on Friday. We are waiting on the results of a CT scan basically if the cancer has spread its palliative care and they will not do the operation.

Where my dad understood he was dying and was a gift really he accepted everything and passed away in a hospice (where he wanted to be) my mum is petrified of dying. Any talk of anything practical and she is physically sick and refuses to talk about it she is also deaf so communication is difficult.

I’m really struggling with what Is best to do, i feel and her close friends agree that it maybe better to not tell her if it’s end of life care. I do think it’s the humane thing to do but feel guilty for not being honest.

I also have a teen daughter with mental health problems who medicates with cannabis. She is traunting and doesn’t want to be in the sixth form again there is guilt I’m not there for her as much as I should be as this week I’m at various hospital appointments with mum. I work full time and work have been great, I know you should take one day at a time but I do feel a bit overwhelmed. Thinking about the next few months and whether I should give up work (of course if I had the financial means to do so I would hand in my notice but being a single mum I can’t afford to) or try to work from home around it all.

I hope you all have a good day

X

2

Welcome to the forum Vickie
Sorry to read of your difficulties.
My personal take on the situation with your mother.
My dad died of pancreatic cancer many years ago. My mother said to my sisters and myself, ’ if I ever I cancer, I do not wish to be told’. Sadly she did have oesophagus cancer a few years later. We respected her wish, and she remained positive.Until her GP decided to tell her, even though we explained everything. My poor Mother never spoke again. Something we will never forget. Complaints to the NHS were put down to our bereavement.
So if you feel it’s in your mother’s best interests to be lenient with the truth then you are doing the right thing. As long as you make it clear to all involved. What ever you decide, it will be from the right place in your heart.
Others will be along with more advice and help, may be a different view to mine.
((((( Hugs to you))))

3

I agree with PET, that is - if it is palliative care only, don’t tell her if it seems kindest. But I don’t think you should give up work.

It’s quite likely, I suppose, that the CT scan will be clear for now, but that and the mastectomy don’t mean that your mother will be clear in future. So you may well be in it for the long haul. I had a number of scans before I had breast cancer surgery, as there’s no point operating if it has already spread. They were clear and remain clear. But unfortunately that is no guarantee that it will not return at any time in the future, and at the same time, people live for years with secondary cancer in some cases.

Maybe others can advise you on your rights to be treated by your workplace - glad it sounds as if they are helpful.

I think you need to see how much information you get from doctors after the CT scan and mastectomy as to how much help your mother will need, before you work out the possibilities for you. Perhaps it is best for your daughter too if you carry on working.

4

There’s a lot to think about.

Do you and mum get on OK?
Does mum own, or rent her house?
Are you an only child, who will inherit the house eventually?
How old is mum?

It’s OK for mum to bury her head in the sand if that’s her way of dealing with things, however if you could get her to at least sign a Power of Attorney, using the excuse so that you can deal with any paperwork while she is having a mastectomy, that would help.

If you were not around, then hospital transport could be arranged for her chemotherapy, appointments etc. Do NOT let her get too dependent on you or you will regret it forever!

5

A difficult situation (to say the least!)

OK, I think if your mum does NOT want to know any results from any scans or tests etc, then SHE has to make that clear to her GP and her oncologist. SHE must write, clearly stating that she does NOT want to be informed of any results, and does NOT wish to be given ANY diagnosis OR prognosis.

She MUST do this, or she cannot ‘stop’ them telling her. (That said, there is a ‘default’ position mostly for medics that they don’t tell patients what they don’t ask…but I wouldn’t rely on this. They can ‘let things slip out’ or ‘assume’ the patient wants to know the results of any tests and scans etc).

You and her GP/oncologist MUST emphasise to her than unless she instructs the NHS NOT to inform her, they may well inform her, and she cannot ‘unknow’ what she is told. If she won’t write that letter, then she is at risk of learning what she does not wish to know.

I would also say that if she REFUSES to even discuss this issue - ie, to tell the NHS she doesn’t want to know anything - then you have to wash your OWN hands of any responsibility, let alone guilt, if she finds out things she regrets knowing. For all her fears, for all her loss of her husband, she is a responsible adult and has to take responsibility for things over and above her (natural) fears. If she won’t even protect herself from knowledge she doesn’t want, well, that’s her look out. NOT YOURS. So do not feel bad about it!

Second, she ‘ought’ (but she might not) to include in the letter that she wants YOU to be told all the results, but that you are undertaking to respect her wish for ignorance. Again, medics will do what the patient asks, so if your mum asks them to tell you, they should do that.

Now, as we know, cancer is ‘fluid’. As Greta says, even a ‘no-metastis’ (spread to other organs, eg lungs, bones, brain, liver) diagnosis now, which means a mastectomy can go ahead, is no guarantee that recurrence - ie, late metastasis - won’t happen down the line, at any point, whether in a matter of months, or years’…no one can really ever say they are ‘cured’ of cancer, as cancerous cells, shed by the primary tumour, can ‘lurk’ in the bloodstream, or ‘nest’ dormant in other tissues, again, often for years and years. So, for your mum, even if she is ‘cured’ now by a mastectomy, it does not mean she is ‘cancer free’ for the rest of her life.

Conversely, even if her diagnosis now is Stage 4 (ie, metastatic), that is not, these days, an ‘instant death sentence’. Patients with metastatic cancer in general are living longer and longer and longer - it is VERY variable, and can depend not only on access to latest drugs (some of which are not available on the NHS because of expense, and some of which are still in trial, or working their way through other cancers first…a drug is often developed for ONE type of cancer, going through trials, getting approval, getting NHS funding, and then gradually being tried out on other types of cancer, repeating all those trials and approval and funding all over again - it can be a very slow process…), but also on the individual patient’s response to those drugs.

However, the principle remains - survival rates for metastatic cancers are improving overall, and the latest push with the newest drugs are showing increasing success, based on stimulating the immune system of the body to fight the cancer.

Increasingly, it means that patients are starting to ‘live with’ metastatic cancer, rather than ‘dying of’ them very swiftly. Increasingly, the new drug treatments (and modern radiotherapy, eg, cyber knife/gamma knife, etc etc) are acting as ‘stepping stones’ and patients are moved steadily from one to the next (when the previous one ‘stops working’ etc etc). It’s a question almost of ‘outrunning’ the cancer…

All the above boils down to saying that even a diagnosis of ‘pre-metastatic’ cancer is no guarantee it won’t return, yet a diagnosis of metastatic cancer is not necessarily an immediate death sentence either…

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I raise a question over ‘palliative care only’. Who is saying this, and why? What do they mean by this?

Cancerworld is highly confusing in its terminology, so at every appointment etc get the medic to say exactly what they mean by the terms they use, whether it is palliative, terminal, incurable, manageable, therapeutic, etc etc.

Strictly speaking, palliative care is ‘best supportive care’…but even that is an ambiguous term. You must get he medic to explain whether any treatment is having ANY ‘anti-cancer’ effect (ie, is either reducing the amount of cancer in her body, or keeping it ‘stable’, ie, preventing it increasing). If it is, then it is ‘therapeutic’ but not ‘curative’. ie, it can keep the cancer ‘manageable’, but will NOT get rid of it all.

If treatment is not ‘anti-cancer’ then it is only managing the SYMPTOMS, and making the patient ‘more comfortable’ (eg, pain free). It is having no effect whatsoever on the tumours themselves, only on the negative impact they are having on the body.

It isn’t ‘useless’ as it is enabling the patient to enjoy a better quality of life.


Another highly ‘weasel’ word is ‘terminal’. Again, demand what they mean by this. Do they actually mean ‘incurable’ (assuming, for the argument, that early cancer is still regarded as ‘curable’ and treatment as ‘curative’, because the odds on any cancer cells having escaped the small primary, and be ‘lurking’ ready to start growing again years down the line, is highly remote statistically).

If they do, then they are saying ‘if we do not treat this cancer it will kill you, and if we do treat it it will kill you but not as fast’. In other words, terminal cancer may not be ‘imminently’ terminal. As I said earlier, although metastatic cancer (and some ‘dangerous primaries’ ARE terminal, such as brain or lung cancer) (the deep irony of cancers like breast cancer is that if it is confined to the breast it won’t kill you, as breasts are not critical to our survival in the way that lungs and brains are!)(one argument for every post-nursing mother to have double mastectomies, but that’s another story!!!) (ditto with ovaries/wombspost-menopause!)…in the sense that they are not currently curable, that does not mean they are untreatable, and that the tumours can’t be kept ‘in check’ by means of drugs and radiotherapy etc etc.

So, as I say, my own personal recommendation is that you get every medic who uses any of those terms to specify just what they mean by it.

7

How old is your daughter (I take it just under 18, if she has started Upper Sixth? Year 13 or whatever they call it now - ie, A2 year). It can make a difference as if she is 18 she falls out of all youth NHS coverage and into adult, which for mental health may be harder to get hold of.

What exactly is her problem do you think? How long has it been part of her life? Do you know what contributed to it?

Do you feel the ‘self-medication’ with cannabis is helping her ‘control’ / ‘minimise’ it, or actually exacerbating it? Is she sticking to cannabis or is she turning to worse?

Although my own personal opinion is that our children take priority over our parents in terms of our ‘attention’ and ‘duty of care’, in your particular cirumstances, with the recent loss of your father, and the threat of losing your mother too (and ALL the care you’ve had to give them, and still with in respect of your mum), that, unless there are REALLY ‘compelling reasons’ for your daughter to have mental illness (eg,childhood abuse, schizophrenia, etc etc etc), at her age, really she should be ‘waking up and smelling the coffee of real life and what it does to people’…

ie, she should be ‘growing up’ to face mortality in her grandparents and the ‘absolute reality’ of life and death. NOT resorting to stupid drugs to stop her feeling ‘teenage angst’ blah blah blah. BUT BUT BUT BUT BUT that is ONLY if there isn’t, as I say, REAL cause for her mental illness…

There is a danger, understandably (and it’s one, as you can see, that I would fall straight into if I were in your shoes) of ‘writing off’ your daughter’s current agonising as simply being the usual tedious teenage obsession with themselves and their first world problems, while you are tackling the really GRIM problems of human illness and mortality.

BUT, it could be, all along, that your daughter really is ‘genuinely’ mentally ill (eg, if something like schizophrenia is developing)(rather than ‘just depression’), and in that case then SHE takes priority, not your mum (who is, after all, an adult…)

(Overall, ‘mental health’ in teenagers is a REALLY difficult call to make - there is a HUGE preponderance to ‘over-medicalise’ these days, and to call ‘unhappiness’ being '‘mentally ill’. The teenage years are total CR*P for loads and loads and loads of teens - they were in my day, and they are now - it is ‘par for the course’ in growing up…and to a large extent we just have to ‘get through them’ as painlessly as we can…the misery of being a teenager WILL disappear, but it’s hell to go through…but NOT a sign of ‘mental illness’.

Unless, of course, there IS ‘real’ mental illness…and THAT is why it’s such a hard, hard call to take. Even ‘merely unhappy’ teenagers can take their own lives…that is the very real terror of parents…)

The danger is, by focussing on your mum’s fears right now, and the practicalities of nursing her, and, of course, your own incipient grief for her, and your state of bereavement for your father, could, most dangerously, allow you to ‘minimise’ what your daughter is going through…

PS do you talk to your daughter about the loss of her grandfather, and what her grand mother is facing? At nearly 18, your daughter should be able to cope with this, and actually help YOU at this stage…

8

Hi Vicki
I’m the mum of a now 23 year old who had anxiety and self esteem problems from his teen years and I would strongly urge you to focus (but not swamp) your attentions to your daughter’s situation. In the kindest way your Mum has had most of her life and although it’s grotty right now so soon after Dads death she is an adult and can make her own decisions, even if they are not ones you agree with. You have already done a tremendous amount for your parents and there is little more you can do. You certainly can’t change the situation there, just give emotional and practical support BUT within limits that mean you don’t get stretched too thin and snap.

Your daughter however has the chance of many many productive and happy years ahead of her but if she gets stuck now, or even goes further down it will get harder and harder to recover from.
She needs time and space to be able to talk, not just to you but to some kind of professional help or counselling. She needs praise, praise and more praise, even just for the smallest things such as getting out of bed, getting dressed etc. If she’s not happy at school why push her to go now? She might be better of taking time out and doing something else (doing nothing is NOT an option) then returning to studies or college later. Adding pressure now may not be helpful.

There are some good courses about mental health in young people on www.future learn.com which I recommend. Not least you will see you are not alone and can see what works for other parents. Theses courses are free and done online at time to suit you.

Cannabis is often contraindicated for anyone with fragile mental health. Although they feel calmer initially it simply masks the underlying problems and it actually has a stronger negative effect in the brain and becomes more addictive. The website youngminds is very good both for her and for you.

Please concentrate on supporting your daughter through her problems. It is a fine line between supporting her to move forward and doing so much for her that you enable her to stay stuck. You won’t get it right all the time, but she needs you more than Mum does, imho.

Kr
MrsA

9

Forgot to say
Please don’t give up your job. Money worries would not be good on top of everything else.
Perhaps work would consider part time or home working or a sabbatical or some combination for a short term. Or you could go sick with stress
BUT remember how you cope with things will be the role model for your daughter, so if you can show that you can look after yourself financially, emotionally and physically and explain to her how you manage, and be clear on the times you don’t manage and work through your problems and emotions will help her learn.
If you keep your feelings and problems hidden from her she won’t learn how to cope with her own.

Don’t make any major desicions until you know Mums diagnosis. Short term caring is a very different kettle of fish to caring long term, and you are already facing the latter with daughter. Her problems are going to take years to fully recover from

10

Wise words as ever from Mrs A (who knows whereof she speaks…)

I’m a ‘contraversialist’ up front about mental health, because of what I’ve said about the tendency to ‘over-diagnose’ teenage misery and unhappiness as being ‘mental illness’ (ironically, the NHS can ‘over-diagnose’ at the exact same time as ‘under-treating’ - as we know, MH takes TIME to treat…pills ‘help’ but it is therapy that ‘does the business’…and that is very, very expensive …)

But, again, as I say, even ‘mere unhappiness’ can lead teenagers to tragedy, so it is NOT to be ‘discounted out of hand’ (ie, even if it is ‘only’ being profoundly unhappy at that all-too-often tormented time of our lives)(would any of us go back to those years? I definitely would NOT!) (and I doubt I’m alone in that!)(teens FEEEEL so, so much…terrifying to even remember, let alone relive)

Where I would absolutely and totally agree with MRs A on is this - that ‘investing’ now in your daughter’s happiness/mental health is absolutely vital. ‘Even if’ it is ‘only’ depression (…) and might well, yes, ‘lift of its own accord’ (eg, she goes off to uni, has a wonderful time with new people there, joins lots of clubs, meets a smashing boyfriend etc etc, and suddenly life is ‘wonderufl’ instead of ‘miserable’), the risk is that it might NOT ‘lift of its own accord’.

My niece developed MH in her teenage years, and TWENTY YEARS LATER she is STILL ‘mentally ill’ on huge huge doses of god knows what for god knows what . It totally and absolutely dominates her life. She is looking at forty and is likely to be childless (she has a partner - ‘issues’ of his own - very common for MH folk to pair up with others with MH, which ‘can’ be good and ‘can’ be disastrous)(mix of both usually, as for my niece)…but how can she possibly contemplate having a baby when her mind is so ‘not her own’ etc etc etc? She dropped out of uni (despite her talent at art), severe social phobia, all sorts of ‘associated’ health problems, such as IBS/FM (again, VERY ‘stress-related’ illnesses), and works in a ‘dead end’ job (from home - can’t cope with anything else).

She is, effectively, emotionally and mentally ‘crippled’…and is likely to be so ALL HER LIFE.

So, that’s why I agree absolutely with Mrs A that ‘tackling’ your daughter’s problems NOW is so, so important. Yes, they might just be teenage unhappiness…but they might be more severe than that. Don’t let them ‘bed in’ and become her ‘normal’ (as they are for my niece - she defines herself as ‘someone with depression’…)

I know it can well be the ‘last thing you want right now’ (!) as in ‘Dear God, I am coping with my father’s death, and now my mother’s likely one, so please, daughter mine, just stop damn well being such a ridiculous NUISANCE right now and GROW UP!’ (which is sort of what I was indicating as I know that that MIGHT be the situation in fact)(BECAUSE it is SO hard to ‘call it’ on MH in teenagers - ie, whether it is ‘trivial’ or ‘serious’…).

Do you talk to your daughter about her problems (and, as I also said, about yours…)? At the very least, keeping open the line of communication to the maximum you can, and she will, is SOOOO important.

It’s worrying she’s getting hold of drugs - yes, I know schools etc are awash with them, but they exist for the most part in isolated ‘cliques’. School (and uni - and, indeed, workplace) ‘cliques’ are quite separate from each other. If your daughter is getting hold of them, then, worryingly, it indicates she is in the druggy-clique where drugtaking is routine and normal, or on the outskirts of that clique. That is very worrying. Talk to her teachers. They won’t be able to ‘do’ anything (not because they don’t want to, because they can’t), but they WILL know what ‘friends’ your daughter is running with, what ‘cliques’ she is in, etc etc.

I completely agree with Mrs A that is she doesn’t want to be in school (especially that school, if that is where her drugs are coming from???), it’s best she isn’t. She can easily ‘wait a year’ to pick up her studies again (IF she wants to).

To be honest, why not rope her in for helping with your mum? It keeps her busy, gets her away from her druggy-chums (not that they are ‘real’ friends, obviously), and above all, teaches her something ‘proper’ about life - ie, that screwing up with stupid drugs blah blah is totally unacceptable when the Harsh Reality of Real Life (ie, cancer and premature death), have to be faced and coped with. Helping you with your mum should ‘grow her up’ big time…

And, of course, if there is ‘real’ MH building up, then having her OUT of school, and WITH you and your mum, means you can monitor her much, much better.

11

PS - I’m sorry if I’m sounding harsh about your daughter. But my son watched his father die of cancer in front of his eyes, just after his fifteenth birthday.

He ‘grew up’ that day.