DM's likely cancer diagnosis... and the practicalities

[BigBookOfNonsense]

DM has told me that she's currently undergoing investigations and there's a strong chance she will be diagnosed with bowel cancer. The medical side of it, I can accept that we don't yet have enough information to do any useful research and find anything actually relevant to her situation so we're just going to have to wait and see.

The practical side, however, concerns me as
a) She has very little practical local support. I'm her only child, I live on the other side of the country and work FT so I'm not going to be available for hospital appointments etc. No other relatives in the same city. She's been divorced for decades. Her one close local friend has recently moved to another city and her neighbours are very transient. In essence, there's no one reliable with 100 miles.
b) She lives in third floor flat with no lift - and I don't know if she'll be able to manage the stairs during treatment?
c) She would have to rely on public transport, solo, to get to/from appointments
d) She's still of working age, and otherwise fit and healthy. While she owns her own home, she's on a low income, her savings are limited and she's previously made reference to having to work until she dies for financial reasons. She won't get sick pay from her employer either. Presumably this means she'd be on benefits - but everything I read in the media tells me that this would amount to a pittance nowadays and so options for softening the above with taxis / cleaners / etc would be quite limited.

Can someone reassure me about how all of this works? As her only child this will 100% fall to me, but working FT in another city means I'm going to be of limited use. All of the Macmillan guides etc. seem to feature people who've got partners / local children / close local friends etc. to help them.

Sorry to hear this OP.
If it will help, the Red Cross can assist with getting your mum to appointments. They just charge for mileage as they're volunteers. This might help a bit?

I'm sorry to hear that your mother might have/ has bowel cancer. When my mother had her tests/ appointments she was informed within days of the diagnosis. She was admitted to hospital for further tests to find the grade ( for her the worse) I would first wait until she has her diagnosis and the consultants opinion of available treatment. I lived a few hundred miles away from her but was able to attend these and perhaps take in the details more than she could. Your mother shouldn't have to go through this alone. Due to the severity of the bowel cancer no treatment was offered and she had to have a major operation to remove a part of the bowel but no chemo or radiotherapy. My mother died 11 weeks from diagnosis. I hope your mother will get the treatment and it's an early diagnosis for her and wishing you both the very best.

Hi OP. I was diagnosed with Stage 4 bowel cancer three years ago. Pending outcomes of the tests she is likely to either have a bowel resection first then 12 rounds of a chemo protocol called FOLFOX. If the cancer is spread it is likely they will put her straight on to chemo and gauge the response before attempting surgery. FOLFOX was very effective for me but it is a very tough regime. I was in bed for close to seven days each cycle (it is delivered fortnightly). FOLFOX also caises neuropathy in hands and feet and an intense sensitivity to cold. I would have struggled living three flights up. Unlike other protocols I’ve been on I really did need care. I needed help to drink and get to the toilet etc so I think if there is any possibility your mum could come to you it is worth exploring. I should also add that I did have a bowel resection ultimately and it is a significant operation - I definitely needed help for a few weeks after it. Please PM me if I can be of anymore help. I’m in Australia so can’t speak to the benefits issue.

Thanks for the responses.

The situation is complicated by the fact that I'm currently working out my notice in one job and due to start another in a few weeks; I doubt waltzing in on my first day and asking for flexible hours would go down well. Unfortunately I live in a houseshare so there's no space for DM and even if I could evict my housemate - which I can't legally - I couldn't afford the extra rent. Even if I could practically move back to my hometown, rents have become punishingly high since I left and my childhood bedroom is an impractical option - DM wouldn't willingly sign up to live with my pets (inc a dog; she is not a dog person and merely tolerates mine for occasional visits). In essence, getting there for the weekends is plausible, but she's simply too far away for weekday visits when all the hospital appointments are. I'm also not going to be able to lift her - she weighs more than me and my own health would preclude such heavy lifting.

@PinkBuffalo - that's really useful information - thank you. I'll store it away for if / when the diagnosis does come.

@Namethecat - it sounds like you've had a really tough time with your mum, and it has driven home to me just how fast things can move. I'll do what I can for her, but I'm only too well aware that my hands are, in many ways, tied.

@Violet25 Not having looked after someone during chemo before, I'm not quite sure I realised what it looks like before your post. Unfortunately, if she's that badly affected, I would have to refuse to collect her from hospital (anyone know if can I do this?) or get adult social services involved (again, can I do this?) because there's just no way I can take on a full time caring role, even on a week on / week off basis.

Does everyone get support from Macmillan? I had a cancer scare a few years ago and they were nowhere to be seen - but presumably their support only kicks in once you're officially diagnosed despite the "maybe" phase being utterly terrifying.

Are they only in certain areas / hospitals / for certain eligibility criteria or is it as widespread as the NHS?

Her GP should put her in touch with social services to arrange a care plan. That's someone coming in up to 4 x a day to do meals, household chores, light shopping. You or she can pay for an organise this independently if you wish to. If through her GP she will be means tested by SS to see if she qualifies for free carers or has to contribute.

Also they won't let her out of hospital if she has no care set up at home and she is ill.

I think Macmillan depends on a) the location and b) the circs of each person. My feeling is it's more for end of life care but don't quote me on that.

With work, is there no way you could ask for compassionate leave - either you old job or your new one for maybe 2 weeks? If you are looking for places to stay, Premier Inn is very cheap if you book well ahead.

She would have to rely on public transport, solo, to get to/from appointments

No the hospital would provide patient transport (ambulance.) Or she would pay for a taxi.

You need to ask for all of this once you know what is happening.

It may not be nearly as bad as you think. If it IS cancer and you don't even know yet, it could involve just removing a small polyp with no further treatment. Don't cross bridges yet- but get all your ducks in a row.

It sounds as if your mum is still quite young if she is working (I'm almost state retirement age myself) so she ought to be able to do a lot of sussing stuff out herself and asking questions. By that I mean she's not a 90 yr old who is frail and unable to ask questions.

Dm was in similar situation. For some appointments she had hospital transport although it was indirect and she had to wait, others taxi, sometimes lifts from friends. There may be a voluntary driving service operating locally, check the council website, which only charges for petrol. Stairs was an issue after the op, as was general day to day care and fatigue. She spent some time recuperating in a care home on a respite basis, so that she had some support while recovering, no need to cook and could regain her confidence. It might be worth researching possibilities once she knows the situation. DM was in hospital for less than a week, care home for a couple of weeks and was driving again within 2 months. Still had to be careful about lifting and stretching.

The only person I know of who had help from Macmillan was the DF of my friend. He was terminally ill, had a stoma etc and in the end stages of his life before the hospice, Macmillan came to look after him at home because he needed a lot of care .

There is no way that 'everyone with cancer' gets a Macmillan nurse.

OP I really think you need to wait for the diagnosis. Not sure how far along the diagnostic path your mum is? If she's had scans or biopsies of anything they found, you ought to know quite soon. If she 'only' has symptoms and has not yet had any real investigations, this could all be premature- she could have IBS or another bowel condition which is no cancer at all. Has she given you any details?

Macmillan can do a brilliant job, but they don't do everything, everywhere and for some things you might be better off with other charities.

I would recommend she finds out what services Macmillan provide at her hospital. Is it big enough to have a Macmillan office? If so, can they signpost her to the nearest money adviser (they are normally very good at this) and sources of local practical help (hospital transport volunteers who will pick up and drop off from home on treatment days). There may well also be a specialist nurse for bowel cancer attached to the unit - if there is that would be the best point of contact for all the things you forget to ask at main appointments, and for further explanation of what any particular treatment involves and the potential side effects.

Depending on where she lives, there may be a community based Cancer Support centre (names vary, but if you google Cancer Support + name of city/county, you should be able to find out what exists).

Also, both of you might find it helpful to be in touch with www.bowelcanceruk.org.uk

Marie Curie may be able to help. They have a volunteer helper service, with support including companionship, driving patients to appointments, etc.

Does she have life insurance with critical illness cover?