MIL Just Heard Cancer Has Returned - Advice Please

Ms_Chocaholic

Hi

My MIL had bowel cancer diagnosed around four years ago, she had an operation to remove part of her bowel and has had a stoma ever since. She also received radiotherapy and chemo (I think chemo, but not sure).

A number of weeks ago MIL had pain in her back, visited her GP who diagnosed sciatica. This got steadily worse over the weeks and last Monday, when my OH called round, she was in incredible pain and was unable to put any weight on one of her legs.

She was admitted to hospital on Monday and has had various tests, including x-rays and an MRI scan. Today the Dr informed me and OH that MIL's cancer had returned and was in her spinal cord (I think). She was being given steroids in the hope that this improved her symptoms and that her mobility may be increased. Dr said her prognosis was not good though, they would not be able to operate and her care would be palliative.

I understand from the Drs that a referral has been made to the Macmillan Nurses who, we've been told, visit patients very soon after receiving a referral (so may expect a visit to MIL by them tomorrow).

Neither me or OH have dealt with a situation like this before .... MIL does not want to return home (fairly steep staircase at home, very limited use of one leg and lives alone). I understand Macmillan will complete an assessment but, given that she does not want to return home, what might our options be. I know from when my dad was in hospital a number of years ago that the health service often want to discharge patients before they are ready to free up beds, but given that the Dr said she had only months left to live, unsure what options there will be available to us and any advice that anyone could offer would be very much appreciated.

Thank you.

allycat999

The options available would be either a care package to enable your MIL to stay in her home, obviously she would need to live downstairs and a profile bed commode ect would be provided to enable this. The care package would also involve Marie Cure nurses to stay with your MIL overnight. If she really doesn't want to go home then the options would be a nursing home or a hospice. The steriods should help your MIL to regain mobility and reduce the pain.
The Macmillan nurses are angels and will talk you through all the possibilities.

belfastgirl23

I'd echo talking to Macmillan for advice. This is exactly the sort of thing they know about. I've also heard very very good reports about the CancerBacup service http://www.cancerbackup.org.uk/Home. They don't just offer advice about cancer but also about all the practical implications for sufferers and carers.

Do make sure you get help in making these decisions, you want to be sure they are the right ones for everyone and taking something on now without knowing the implications could be awful for everyone.

And lots of luck...

bluebell13

As your MIL is in hospital I think she will be seen by the Hospital Palliative Care team which is a Macmillan Nurse who is hospital based. I did this job myself for a while. Usually patients are seen very quickly. A full assessment will be done taking into account both your MIL health, prognosis and wishes for her future care. If you have a local hospice this may include referral to them if this is what you MIL wants. The nurse should also speak to you and your OH so long as your MIL is happy with this. Obviously, this is how things work in my area so I can not guarantee this but it is just general advice.

Your MIL cancer is probably in her spine which in turn squashes the spinal cord reducing mobility. The steroids will aim to reduce the tumour hence relieving the pressure on the spinal cord, and hopefully at least some mobility will return. However, sadly, there are no guarantees that this will happen.

Lastly, I am sorry that this has happened and wish you all the best in what must be very difficult times.

Ms_Chocaholic

Many thanks for all your advice, it is much appreciated. I imagine that MIL will agree to Macmillan nurses discussing her situation with us too as she clearly has difficulty in discussing anything with us (asked Dr to tell us bad news on her behalf).

As I said before, she doesn't want to return home but we would be unable to care for her at our home as no downstairs loo and me and OH work full-time. I'm concerned that our inability to offer to care for her in our home will be frowned up. Does anyone think this will be the case?

margaretclare

Hi, and deepest sympathy to you and MIL.

I would add to what others have said. Get in touch with the local Macmillan Team soonest, and rely on what they say. They've seen it all before and won't be surprised by anything.

I would also say: make sure MIL claims every penny of benefits to which she's entitled. If she's under 65 that will be DLA (Disability Living Allowance), if she's over 65 it's Attendance Allowance (AA). Both these are 'fast-tracked' in cases of terminal illness i.e. she doesn't have to wait the normal 6 months' qualifying period. Make sure she gets her claim in ASAP and it will be dated from the time she makes the claim. See http://www.direct.gov.uk/en/Diol1/DoItOnline/DG_10017715

Money does not buy health, or life, but it can buy a bit of extra comfort, pay for help to come in, pay for adaptations, equipment, all those kind of things.

I can't see why anyone should 'frown on' your inability to have her in your home. As someone else has said, would it be possible for her to return to her own home with a bed etc downstairs? And she should be eligible for carers to come in to help.

You say she doesn't want to return home - has she specified what she does want to do?

HTH

Margaret

Ms_Chocaholic

Thanks for your post, MC.

MIL said she didn't want to return home, she didn't give a particular reason other than the stairs and when we broached the subject of a stair lift being installed, she still did not want to return home.

In terms of what MIL wants, she hasn't said but, reading between the lines, I think she is thinking the only options available are a nursing home.

In terms of benefits, I think she currently gets her full entitlement. She is 74 and last time I was aware of what she got per week, it was around £150 (that could be a few years ago mind). I'm sure that included an element of AA too but I will have to check with her what exactly she does get.

Ms Choc x

margaretclare

Hi Ms Choc

It would be a waste of time, money and effort having a stair-lift installed. I would dismiss that idea out of hand. Sorry to be blunt, but she ain't gonna have time!! On the other hand, it's sometimes possible to have a room downstairs with commode, hospital bed etc.

Wait until the Macmillan Team have seen her - they'll know what the options are and will advise.

If she gets full State Retirement Pension, that's £87.30 a week. If she gets Attendance Allowance at the full rate, that's £64.50 as well. There may possibly be some Pension Credit in addition.

There really is no point in !!!!!footing around with things as they are at present. No point, because no time!

Have a look at this: http://www.macmillan.org.uk/Contact_Us/ContactUs.aspx

There are contact phone numbers and an email address. Why not send them an email asking the same questions you've asked here? They're the people who know, they do it day in day out.

Best wishes

Margaret

Edit: I didn't realise I wasn't allowed to use a common phrase indicating the kind of soft steps that a cat takes, to indicate time-wasting.

zhari

Hi sorry to hear the news and wanted to send you a big hug.
My MIL was diagnosed with bowel cancer about 2 1/2 years ago. She was told that she had 3 to 6 months and that treatment was not an option. She was offered so much help and support by the McMillan team and also social services that she was able to stay in her own home until the end. Like you my OH and I were both working and we have children at home, so it wasnt really possible for us to care for her full time. We did help as much as possible with her care but there was a lot of help on offer for her during the day and also we had a nurse who slept over two or three times a week. They dealt with everything from financial entitlements to medication and supplying aids for bathing her etc. Please confide all your worries to the nurses who will help in any way they can and they do support the whole family.
To stay at home was MIL's choice but if she had wanted a hospice place it would have been made available to her straight away.
My thoughts are with you. x

Errata

Couple of things come to mind. MIL might be frightened to death of spending any time at all alone in her own home, and she would do even with a care package, and right now can't find the words to explain that. Can't say I blame her.
Nursing someone at home who has terminal cancer is not for the fainthearted. That's ok, some people can and some people can't.
Why not contact your local hospice and find out what's what? Some will only take people with less than 4 weeks to live, others will offer day care for as long as necessary.
Cancerbacup, as someone else has mentioned, has a telephone helpline and they're terrific.

Ms_Chocaholic

Just wanted to let you know how we were getting on. Also need a bit more advice re care etc.

MIL has been taking steroids for a number of days, these have increased her appetite and she appears to be feeling brighter. As a result of Margaret Clare's advice, when I visited MIL the other day I asked what she wanted - she wasn't sure so, after exploring it further and discussing whether she could manage at home, she realised that her only option would be a nursing/care home.

As a Macmillan-type nurse (I don't think it was Macmillan but a similar agency attached to the hospital) visited her today I suggested that she discuss all her options with them and, if she wanted, they could ring me to discuss it too.

The nurse did visit and telephoned me later this evening. She expressed some concern regarding MIL's "bravado" attitude to the situation she is currently in, a concern I had also had. Nurse explained on the phone that MIL can possibly move to a rehabilitation hospital nearer to us for a few weeks, however when I asked about nursing/care homes, nurse was not able to offer any advice and suggested I contact Social Services. No problems contacting Social Services but I was hoping that the services she offered might be a "one-stop shop" in terms of advice etc.

Can I ask others who may have experience of this .... do I contact Social Services direct to make a referral, I take it I ask for an assessment to be completed of my MIL. What do others think might be the outcome of this assessment, is it likely that she will be offered financial assistance to move into a nursing/care home or will they just want to adapt her home and offer nursing care at home to help. This is not what she wants and I'm slightly concerned.

Thanks and sorry post was so long.

Ms Choc x