To feel upset with my mum for not going to the doctor?

[LBA40]

My mum is 65 and has had various symptoms over the past few years which make me think she has bowel cancer. She thinks it’s just anxiety and IBS but I am fearing the worst. (She has a family history of bowel cancer and the symptoms are pretty extreme - though not actually painful.)

When she first had the symptoms, my brother and I were nagging at her a lot to try to get her to book a colonoscopy, but she said she didn’t want to because she wouldn’t want to have treatment even if she did have cancer, and also because she remembers her mum being extremely sore for a few weeks after a colonoscopy and her health taking a downward turn after that experience.

After about a year of nagging her to seek a diagnosis, my brother and I independently decided to stop going on about it because it was really upsetting mum and it was having a negative impact on our relationships with her.

A couple of years have passed and the symptoms seem to be generally getting progressively worse. Over the past few months I’ve been feeling really upset about it. I want to be there for my mum but I think I need to accept that she’s going to do this her way and I am not going to get any clarity on whether she actually has cancer or not.

We have always had a very close relationship - unhealthily so when I was at school - we used to refer to each other as best friends when I was a child and she leant on me a lot when she was going through difficult times emotionally. I believe it has cast quite a shadow over my emotional life as I’ve had quite a few codependent relationships with people with big problems. (I’m grateful to be in a stable and balanced relationship now after years of therapy.)

I sent her an email today explaining that this uncertain situation is really affecting me emotionally, that I’m not putting pressure on her to go to the doctor (her body, her choice), but that I wanted to be honest with her about the impact it’s having on me and that I have decided I need to acknowledge my feelings about this even if she can’t/won’t.

I love my mum so much. She’s a very kind, sweet, generous person who likes to take care of others. But her response to my email was that it made her feel anxious when she was reading it and she’d been feeling better earlier today so she didn’t want to dwell on it. She thinks I need to stop thinking about cancer and focus on positivity. Also that she has heard about a homeopathic doctor who is also a medical doctor so she might go to see them. She’s scared. I get that.

If by some amazing chance it is IBS I suspect part of the source of the extreme anxiety could be that deep down she thinks she has cancer and is therefore terrified. She is regularly cutting out more and more foods saying that they aggravate her gut, and she has lost quite a lot of weight over the past few years.

Part of me thinks I should allow myself to express my true frustration and upset to her. Part of me thinks I should step back and just try to manage my feelings and be there for her in a more arms length way. It makes me feel sad to write that.

Thanks for reading.

If you have the money to spare, would your Mum do an at home screening test for bowl cancer? It might be easier for her to do it that way rather than have to do battle with the NHS.

I put in a link to one company, but there are lots more. Some just do tests for traces of blood in the stool, they are ok, but the really good ones also look for DNA traces in the stool

www.pallmallmedical.co.uk/bloods-testing/coloalert/

It says here that "Everyone aged 60 to 74 years who is registered with a GP and lives in England is automatically sent an NHS bowel cancer screening kit every 2 years."

It's a very simple test, just looking for blood in your poo.

Do you think she hasn't sent hers back?

The private clinic linked in the post above mine is somewhat misleading where it says "In the UK you don't qualify for the NHS bowel cancer 'FIT' test until you're 60,"

My link says "The programme is expanding so that everyone aged 50 to 59 years will be eligible for screening. This is happening gradually over 4 years and started in April 2021 with 56 year olds.
The programme has also started to include 58 year olds, so you may get a test before you're 60."

A possibly helpful gov.uk link.

Your mum might be prepared to do the FIT kit test, which is very simple, if she can't cope with the thought of a colonoscopy at the moment.

I got one and l am 57.

If she has blood on poo whatever age she is she just needs to ask gp for home test kit.
honestly I really feel for you - colonoscopies can be done under general on nhs they do not hurt at all (I’ve had something like 8) and if there is a polyp they nip it out - there is zero pain I have watched them do one of mine.

OP, you could suggest the test other's have mentioned, but then I think you need to leave it.

You may be right your mum is mainly scared. She may also have made the decision that she would not treat, and so does not see value in pursuing it. That's not necessarily unreasonable, even if you don't think it's the best approach.There are people who feel that something will get them in the end, and better when they are a bit younger and have it happen fast, rather than when they are old and frail and can't get about anyway, and have it take them slowly.

But whether or not she's thinking logically, you won't get anywhere harassing her. Your feelings are your own to manage.

Your poor Mum must be really scared. She seems to have full mental capacity so she can make medical decisions for herself. It sounds as though you feel responsible for her because you were so close when you were both younger, and of course you want her to be alive and well for many years. I feel for you but realistically you have tried everything.

If it’s really been years since her symptoms started it’s not likely to be bowel cancer. By the time most people have symptoms they would be lucky to have months left to live and it might well be too late to even try to treat. That’s why it is recommended to get colonoscopies routinely even in the absence of symptoms. I don’t know if that’s comforting or not but it’s probably not cancer.

I think you've sadly done all you can. It was important to express your feelings about the situation to your mum. It seems that despite it all she has chosen not to get investigated. Maybe she is in denial or has decided that if it is cancer she doesn't want to get treatment. It's absolutely horrible for you but unfortunately there's nothing you can do as its her choice. Beyond sharing the impact on you with her, the rest is now down to her. But you will probably need support, especially if her health starts to deteroriate. Is counselling an option?

Bowel cancer is quite serious.

The major symptom that doctors look for is blood in the poo. Does she have this symptom?

Either way, she has said that she will not seek treatment for cancer.

My dad had bowel cancer. He did have surgery and chemo and it was fucking brutal. It came back three times and the third time he refused chemo because he just couldn't face it again.

Your mum does not have to seek diagnosis and get treatment because of your worries.

And that's if she even has bowel cancer. IBS is very common and gets much more common as people get older. Most older people develop lactose intolerance and a range of other intolerances.

It sounds like your mum is very clear in her own mind what decisions she has made and she is happy with this.

This reads as if it is more about your own anxieties.

That’s true, it’s unlikely this is cancer if the symptoms have been there for years. The weight loss could be due to cutting out food groups.

I hear you op.

My mum had symptoms of a different cancer for 2 years, which really impacted her life. As a consequence they impacted on those around her increasingly so - she refused to come to DC school plays because she was so worried she might not make it to the loo, wouldn't join us on days out as she couldn't guarantee instant access to a toilet when she needed to wee - it was upsetting for the DC as they felt rejected, and I felt angry at her refusal to seek professional help whilst unloading on me.

In the end I told her that if she didn't want to get professional support from her gp then she wasn't to speak to me at all about any of her symptoms - it felt brutal but very soon after she made the appointment which started up the whole cancer treatment plan - life changing surgery and chemo which completely removed her cancer.

I had a LOT of counselling around this time - I realised I was taking on a 'parenting' role for my mum, she was seeking constant reassurance and as I was unable to give that I was the one left feeling inadequate despite me not being qualified. Removing that role and switching to adult/adult, where you explain your emotional boundaries is a great step to protecting yourself op.

She's scared. But so are you. Her unwillingness to seek help is up to her but to still burden you with all her symptoms as well as expecting emotional support is too much.

In the same situation. DM has symptoms of cancer (now, not at the time of blood tests) and a full blood count showed due to certain levels of things like ferritin (I think) that it’s likely she has cancer (GP advised this on the phone). The blood test was done as she had a skin problem, cellulitis I believe. There was no blood, no other symptoms.

DM has refused any further tests and has declined treatment- we have a three page letter from the surgery detailing a full conversation that the GP had with DM in which she refuses tests and treatment, that she’s sound of mind and has valid reasons not to pursue.

Kindly, you can’t keep bringing it up time and time again. I appreciate it’s mental torture that you don’t know what’s going on with your DM, but if she’s going to refuse treatment, then getting a diagnosis is pointless imo. I’ve gone over it with my DM, she point blank tells me to shut up- she’s not having anything done and I’m to let it go. It will be emotionally wearing for your DM if you make it about you.
It’s not your body, it’s not about you, it’s about her wishes and what she wants.

I know it’s frustrating, means sleepless nights and worry for you etc. Does your mum talk to you about her symptoms/pain levels? Mine does and that’s the bit I find the hardest. All I can do is be there.

Just to mention you can have cancer for years and not know, my father did and he was having tests but sadly they missed it.

Yes it's hard on you but ultimately it's her choice .You can choose whether to support her or not, if not then you should reduce contact. But it's unfair to continue to pressure her on a decision she has made.

Thank you so much for your responses - having posted this well after midnight I didn’t expect to find so many kind words and so much helpful advice first thing in the morning!

My mum does regularly have blood in her poo, and was asked to come in for further tests after the first time she did that poo test (maybe 4 or 5 years ago?). She never went in and was then sent another test a couple of years ago. When she did the second “at home” screening test a couple of years ago she told me she was having a “good day” and that she could not see any blood that day - and the test came back negative. As far as I know you don’t tend to get blood in stools with IBS - but I suppose it’s possible it could be a number of things combined including perhaps IBS, intolerances and piles…

As another poster mentioned about their DM, my mum is having to make her plans around whether she can be near a toilet. She won’t eat or drink all morning if she is making a short journey somewhere. She has actually pooed her pants a few times when she hasn’t quite made it to the toilet. Recently she made a few train journeys to a nearby city to visit a beloved auntie who was gravely ill, and she didn’t eat or drink until she got home at about 4pm. I guess this kind of thing is probably the reason for the weight loss. I don’t worry so much about food as I know intermittent fasting can be good for health - but I do feel concerned about the way she controls her water intake on these days.

I’m really grateful to those of you who have shared personal experience and insights.

My mum does regularly discuss her symptoms with me and I do find that difficult. I haven’t tried to push the doctor agenda in the past two years at all - apart from the odd occasion when she has mentioned that she’s thinking of going and I try to very gently encourage it, but she usually doesn’t get around to going or changes her mind.

To those of you who have said this reads more like it’s about my anxiety and that my feelings are mine to manage - thank you, I needed to read that. I don’t feel I have the spare money for regular therapy at the moment, but I think I will try to see my most recent therapist just for four sessions in order to have some support around this specific issue.

I have a really busy few days coming up and I happen to be staying over at my mum’s tomorrow night, so I may not check in now for a couple of days.

Thank you again for all the support.

Hi OP, this is so difficult but I just wanted to pick up on one aspect. Yes your feelings are yours to manage, but so are hers. If she can say to you that you discussing it is something she'd rather not hear, well, I think you can gently push back and say the same to her.
"Mum, I really sympathise but I need not to hear anything about your symptoms please because I can't help you with them and it just leaves me feeling anxious and burdened. We can talk about again if you're prepared to start handling it a bit differently but until then can we drop the subject please?"
I may not have got the language quite right there (bit early for my brain!) but you get the idea.
Best of luck.

My Mum and Gran both died of bowel cancer. My Mum had Crohn’s disease (which carries a higher risk of bowel cancer) and made the choice not to have regular colonoscopies that probably would have picked it up earlier than it was - she had very severe medical ptsd from having many surgeries etc throughout her life from the Crohn’s, which was very severe and was diagnosed when she was a child. She had effectively lost half her bowel to surgery.

When she was diagnosed with bowel cancer it was too late for any treatment. She was actually diagnosed with it because she had a knee replacement op and they couldn’t get her bloods stable afterwards and various scans led to finding it - she died 6 weeks later.

It’s really hard not to feel anxious but ultimately this is your Mums choice. She has all her marbles mentally by the sounds of it. She’s making an informed and conscious choice, and refusing investigations and treatment is a choice. Not a popular one or a particularly clever one but it is a choice and it’s a choice many make: you have to respect that. If you keep pestering her and pushing her you’re going to lose any sort of good relationship you have. You’ve said your piece, you have to let it go.

My Mum and I had a difficult, complex relationship and for a long time after her death I was angry with her for not having tests earlier etc but now, having had some horrible medical stuff happen myself, I can see why she felt that way.

The HCP in me says obviously she needs medical input. But then also respect her choices.

The other part of me says you need to deploy some tough love. When she mentions symptoms you need to ignore, do not entertain any notion of conversation about it because what is she trying to achieve?

Same here - actually 56, in Liverpool, if that makes a difference? I’m not sure if it’s a national roll out or a pilot in our area?

Suggest that she does the test. If she has cancer, all the homeopathy in the world is not going to cure her.