Seeing oncologist

[TeaAndStrumpets]

My DB is elderly and lives alone. In October he collapsed while out doing his shopping. He was admitted to hospital and as well as infection they discovered cancer in stomach, liver and possibly lymph nodes. He had fluid round his lungs which we were told is a sign of the cancer spreading.

He was discharged home after a few weeks but had another fall and lay undiscovered for some days so was readmitted. He has gone in a few weeks from biking everywhere to barely able to walk even with a frame. He is extremely bloated - think Henry VIII. Breathing horribly laboured and bubbly sounding. At the moment he has been placed in a rehab home to improve his mobility. He would like to go home but his home is extremely unsuitable. Absolutely awful. Dirty and piled high with rubbish. Been like it for years, family never allowed in but he would visit their houses quite happily for family events.

OK my question is, while he was in hospital the second time my younger brother (after speaking to a doctor on rounds) got the impression that as the cancer was so widespread, it would be palliative care only and DB would not be seeing an oncologist.

Now we find out he does have an appointment, next week. So perhaps other DB is mistaken that our brother wouldn't need to see a specialist? I thought it seemed odd, but have no experience. It is so frustrating living some distance away, all my information is second hand. Please could anyone tell me if this is standard procedure? What can the oncologist tell him? The home he is in still haven't received his notes, so the system seems somewhat mysterious to me.

Thank you.

Have asked Mumsnet to move this to the cancer board

Firstly, I hope that you are ok OP. Cancer is awful for not only the patient, but the family too, so please make sure that you look after yourself at this time too.

Has your DB had an official diagnosis already? Or any oncologist appointments? X

Sorry you're going through this.

I'd expect oncology to be involved - everyone I know who has incurable cancer is in regular contact with their oncologist (sadly quite a few I connected with whilst going through my own treatment).

Palliative doesn't necessarily mean no treatment - it means they will treat to improve quality of life and reduce symptoms, and perhaps control the cancer rather than in the hope of a cure.

You can have palliative radiotherapy, chemotherapy, even operations to improve things whilst it is unlikely to rid your brother of cancer.

Would your brother be open to someone going to the appointment with him? It can be very overwhelming with a great deal of information given as decisions to make so it can be helpful to have someone else there.

@Mumto42005 @ClashCityRocker thank you so much for your replies.

Younger DB is going with him this week. The doctor at the hospital said there would be no treatment due to his age (81) and frailty. So perhaps he was talking about surgery. Hadn't realised palliative may include other treatments.

I think we were a bit clueless about the procedures so much appreciate any insight. It will be good to get some proper information first hand next week.

DB is a very laid back person and is very accepting of everything, there is a whole back story to that regarding learning/developmental delays. He has never left the family home but worked and paid his bills. He is really happy in his bubble. Nobody wants to ask him about wishes etc.

I suppose we are the ones finding it hard. I had three brothers, one died this Spring (not cancer) so losing two siblings perhaps in the space of a year feels like I'm in never ending grief. I also have a sister who is suffering with me...you really appreciate the family at times like this.

In reply to above, yes he will see the oncologist next week, but he has been told about the cancer diagnosis already.

My Mum had an incurable cancer @TeaAndStrumpets and had regular oncologist appointments throughout, as although she was told that it was incurable right from the get-go, she was able to choose to have treatment to prolong her life, and make her a bit more comfortable.

She had chemo until she was told it was no longer feasible as it just wasn’t helping to shrink the tumour and her symptoms, and it was making her so incredibly poorly so it just wasn’t worth it. It was at this point that end of life care was discussed with a cancer nurse, who helped her with so many things, from financial help (she was 54), to her wishes, emotional support and ensuring she was comfortable as her symptoms progressed more. I’m not sure where you are but this was in UK so if you are UK based, it may be worth asking about this if you feel the support throughout would be useful to your brother.

The appointment will give you a better idea of things going forward, so it’s hard to say what will happen, but hopefully things will become clearer after the appointment as to the next steps forward.

It sounds like you’ve had an incredibly tough year, so my only advice to you at the moment is to be kind to yourself, allow yourself to be upset as to what may be ahead, and to tell your brothers to have a list of any questions that they may want to ask for the appointment.

The oncologist is the specialist in the area of cancer, so will know better whether anything can be done, rather than the doctor on the rounds, who is more than likely trained for numerous illnesses and not specifically cancer (not of course saying they don’t know what they are talking about, as our doctors are amazing, just that this won’t be their area of expertise).

I will be thinking of you and sending you huge hugs at this awful time x

@Mumto42005 Thank you so much for your very kind wishes.

Just to add @Mumto42005 Yes we are in the UK so hopefully the support will be there.

It was so sad to read about your Mum, 54, is no age.

Thanks again.

Thank you @TeaAndStrumpets - My Mum was my world so it is still a great loss every day 12 years on.

I hope that you get some answers, and know that although I don’t know you, I will be thinking of you all. Wishing you the strength to get through x

Thank you @Mumto42005 it is lovely of you to say that.

A hospice nurse may be able to guide you through his wishes together.
We had one visit when my sister was coming to end of life and they went through a lot of practical stuff with us all.

I'm sorry he's going through this.

Thank you. I hope there is some help after he's had his appointment this week. A hospice nurse sounds the very person to talk to him. He tends to clam up with strangers, but he has liked the nurses at the care home so far. They have been extremely kind.

Quick update, the oncologist explained everything very clearly. DB is being found a funded care or nursing place with 24/7 care. He had hoped to go home but not safe. Prognosis 3/4 months but the oncologist feels it will be sooner. The cancer is primarily oesophagus/ stomach , which has spread to the liver and possibly lungs. Lymph nodes involved hence awful edema. DB is perfectly calm and knows he is dying.

In an odd way it's almost a relief to put some numbers on it.

Thanks again to the lovely posters who offered support.

Another update. DB being discharged home alone with 4× day package of carers going in. Apparently, according to the Social Team the oncologist's recommendation is "only advisory" They have asked DB if he wants to go home and of course being quite an innocent he said yes. Tomorrow sees a big battle!

Gosh, that's so so tough for you. Both with his diagnosis, and now also with the question over care.

Best of luck.

Thanks@TheSpottedZebra it is a real worry. His house is awful, dirty and rooms piled high with rubbish. He is quite poorly now and barely eating and drinking. Perhaps the end will come before he is sent home. There is no good option.

Oh @TeaAndStrumpets, I really feel for you all as I know how stressful and upsetting it will be for all of you. Please make sure you have time to breathe and take everything in as it will help everything become clearer for you.

Does your DB want to stay at home? Or is he not really having a moment to choose? I know when being discharged from hospital everything is fast paced, so the best decisions aren’t always made by the social team as they want to free up beds. I know this from past experience of working in a role connected to discharging people from hospital. Although I know they do their very best, it’s not always possible with the pressures around freeing beds etc.

Did you have any luck with a hospice nurse? And please make sure someone helps him to claim PIP. I don’t know his financial situation, but it may help things for him over the last few months, and he is well entitled to it! Even if to put away to help with some things in the last weeks or so to ease pressures.

As always, sending huge hugs to you all. Here to listen with the others if you need to rant or get anything out x

Thanks@Mumto42005. Last week he seemed to have accepted being where he is. Today he is suddenly very keen to go home. A cynical side of me wonders if someone has presented it as a good option. No sign of the promised Macmillan nurses. He is in a rehab home he was discharged to from hospital, to improve his mobility. They are nice enough but it is true that it is not a place for the terminally ill, and they need the bed. Such a change from all the oncologist said should happen. I will mention PiP, he only has his state pension.

Bless him… it may all be too much to take in maybe?! With his learning / developmental delays and enjoying being in his own bubble.

You can always express your concerns / wishes as his family if you don’t feel the options being presented are in his best interests and if you feel when discussing with him that he would prefer otherwise than to going home.

Has anyone professional mentioned helping him to clean up his home / make it more habitable and comfortable for him? The last thing he needs is to become even more unwell due to his home not being the cleanest (I truly mean that in the nicest way possible) and with this cost of living having to keep warm which he will need more than ever now.

He may not want to apply for PIP but I thought I would mention it as I know they can fast track it when someone is terminally ill so that the long drawn out process isn’t adhered to.. and especially as he has always worked and deserves that little extra help right now! Keep pushing for the MacMillan nurse as my Mum’s (via the hospice / oncologist) was amazing and worth her weight in gold.

I have been thinking of you all x

@Mumto42005 Thanks for your kind thoughts. Yes it is unfortunate he doesn't have any mental health diagnosis we can point to. He has always been what you'd call slow, not stupid but no social skills and severely dyslexic. An innocent, really. But yes he had made a nice nest for himself with his records and hobbies. And lots of beer!

The kitchen was a health hazard so that has been cleaned. The rest will need lots of skips. He has lived there since childhood. When our Mum died my siblings and myself gave him our shares of the house because he would be lost without his familiar surroundings. We will be belatedly selling the house once he passes, but so thankful he's had a safe home all these years.

You can request a deep clean of his home from Adult Social Services to make his home habitable. Depending on his finances he will probably have to pay for this but the Social Worker can arrange it. You will need to arrange a cleaner to go in regularly as Social Services do not fund this and carers will only provide the care he needs. They are not cleaners. You can also arrange meals on wheels to provide a cooked meal each day…

I'm so sorry your brother is being treated like this. It's hard to give specific suggestions as the system is slightly different depending on where you live, for example Macmillan nurses don't seem to be available everywhere, and hospice provision varies. But if the consultant is talking about funded nursing care it certainly seems inappropriate for anyone to be sending your brother home alone.

In your position I'd tell the discharge team that with your brother's mobility, his need for nursing care and the state of his house it would be unsafe to discharge him home. At the very least they need a home visit from an occupational therapist to advise on safety and anything that needs to be put in place before discharge.
Then find out from the palliative care team which of them is responsible for him. In my area there isn't a Macmillan service but palliative care is coordinated by the local hospice and each patient referred to them is allocated to a specific nurse. They do much more than nursing, they will advise on funding availability and how to get it, organise OT visits, advise on the types of care available, pretty much everything really.
If there doesn't seem to be anyone like this then I'd go back to the consultant and ask him to intervene.
Finally I'd consider whether there is a specific charity for the type of cancer that your brother has. If there is, it may have an advice line you can call. Like the palliative care nurses, these are usually pretty clued up on everything, not just nursing. They will certainly be able to advise on a fast track attendance allowance claim (your brother is too old for PIP but should qualify for AA instead).

It will all become clearer once you understand how the system works where you are. I hope you can find some support soon.

Given he has cancer and less than six months to live, I would make enquiries about "Fast track" continuing health care. It's a bit of a minefield but if he's eligible, then he should receive fully paid for care at either a care home or at home, as he prefers.

https://www.england.nhs.uk/healthcare/

@AdmittowearingCrocs @MontyDonsBlueScarf @Ineffable23 i appreciate all the advice and am noting down everything. Younger bro lives nearby and is going to the GP to get copies of the referral etc. and see what nursing help is available. I suggested also he ring the oncologist's secretary to ask if the imminently terminal diagnosis and recommendations for 24 hr care are "just advisory" as claimed by the Social Care team. I can't believe that can be true.
Anyway, younger bro is no shrinking violet so will do his best.

The house is a tricky one. Before we had a diagnosis of so little time left, it was left as is apart from the kitchen being cleaned. In order to clean everything else it needs completely emptying. Eg the carpet is rotted away. A team came out to fit grab bars and said it would be fine as long as there is a clear path to the hospital bed. It does seem wrong to let DB live there. Last time he was allowed home he fell and lay undiscovered for days, so having carers going in is slightly better I suppose. He will be getting an alarm bracelet too.

My only consolation is that DB in all this is perfectly cheerful and never gets stressed. He will be happy back in his bubble. I think he assumes he will be able to go back to how he was before, pottering about and playing with his piles of treasures. He is the only one who isn't upset.

Anyway, many thanks to every one offering advice and support.

@TeaAndStrumpets , your brother has a lovely family.