Where do we go next?

[Holdingontohope]

Lots of questions, my mum is currently very ill now, she is tiny and constantly vomiting, her reoccurance is apparently in the peritoneal lining, she is refusing hospital as she probably has a blockage again and they won't operate, she was on steroids for about a week where she was eating and looking and feeling better, they have stopped and now is dropping dramatically, she is on a lot of meds and pain relief, my questions are Frank, my mum is suffering and she has had enough, we aren't sure if the hospice will take her in yet, and I don't want her being with strangers but I would like her to be more comfortable, can she have a morphine driver at home and not be considered end of life, could it be temporary?, why can't she stay on these steroids, I can't remember the name of them, I know steroids are not ideal for long term use, she is so skinny now I can't see how chemo will be given anymore, my sister knew that before covid some people were in hospital as they needed help getting through chemo, why isn't this offered anymore, I don't think she is going to recover but she seems to be suffering so much now i don't know what to do, any advice gratefully received Xx

[Katmal-UK]

Hi If you havent already done so you need to speak with your mums Oncologist ASAP. Your mum shouldnt be suffering like this. If you cant get hold of your mums onc then speak with Macmillan or Ovacome. I hope you get the answers you need and the help for your mum. Big Hug Kathy xxx

[SUE7777]

The Hospice and pallative care nurses should be able to help, they don't just help when you are admitted to a Hospice. Your Mum should be getting everything necessary to make her comfortable. Good luck and take care. Sue xx

[Clairefb31]

Hi, Sorry to hear you're going through this. It's awful to watch your Mam in pain! I understand how she's had enough as my Mam was the same My story is similar to yours. My Mam was in hospital for most of March with bowel blockage and while in there was given DNR and news that she might not get chemo and that it would be palliative as she was to poorly she was on her own as we couldn't visit with Covid!

When she came out of hospital she was given news that she was terminal and then after a week told she had weeks

Me and my sister looked after her at my sister's house as we wanted to be with her otherwise we might have chose a hospic but Covid made a tough situation much harder! Like your mam, my mam was so thin and was being sick alot and couldn't keep anything down

The GP, Macmillan nurse, community nurses, Marie curie nurses all helped keep her at home they were amazing she was not in any great pain as she had a syringe driver and other sites for pain relief. As soon as she seemed agitated we'd call the nurses and they came out within half an hour. She was given the option to go to a hospice but we wanted her home because of visiting restrictions.

Your poor mam shouldn't be suffering I'd maybe get in touch with her GP because with us it was the GP who sorted the care. Hope you get your poor mam some help soon.

Claire xx

[Hidden]

Hospices are not just for end of care, I don't have personal experience but have read on here how some have gone for a short stay to sort out pain relief or other symptoms, and then returned home with possible district nurse visits to assist further once home.

I agree with all of the above and think you should contact her GP who could arrange the care she needs for you. I hope you get something sorted very soon, as it sounds like you are both in need of desperate help, or perhaps you could contact your local hospice directly who could tell you who the referral should come from or what the best way forward would be. Good Luck x

[Neona]

My mum’s carer said that she had cared for people who had been on a driver for a while and then had come off it. Also I was on steroids for about 3 years the first time and 1 1/2 the second time.

[bamboo89]

Agree with Lyn's answer - contact your mother's GP asap and ask them how to get in touch, or be accepted by, the local hospice team and tell them its urgent. A palliative care nurse will come out to your mother and prescribe, via the doctor, whatever she needs. Palliative care is not just for end of life - I have had a palliative care nurse from my local authority hospice monitoring me for the last two years - she visited me 3 times while I was on chemotherapy recently, just to check I was okay when I was suffering a bit, to give advice and arrange any medication that might have been necessary. If they have a bed available, they might take her in to get her symptoms under control at least, or simply to keep her more comfortable and reduce suffering. You may even have a non Council run charitable hospice in your area, lots of areas in the country do - not sure how to sign up with those (we don't have one here) but try ringing them direct or ask the GP.

The treating hospital should also have a palliative care team, but I'm not sure how that works since my own cancer hospital, whilst not that far away, is in a different London borough and much farther away than my local Hospice team.

It is undoubtedly more difficult having these services readily available because of Covid, but hospice services have not stopped operating, even when they were overloaded during lockdown, though visits there for lunch and that sort of thing, available before Covid, are not now possible. If your mother gets taken into a hospice, they will allow one family member to visit, unlike hospitals.

If your mother is nearing the end (sorry to be so blunt) then I would ask (or insist) she has some low dose steroids to help her - long term effects will hardly be a problem will they, which is what I ended up saying to the hospital doctor when my father was nearing the end after they took him off them - because it was a hospital and not a hospice, I really had to be quite tough, persistent and insistent with them, but he got his steroids ongoing then and they did ease him.

I am sorry you're in this position - there's nothing worse than watching a loved one suffer...

Miriam