Palliative care

[Kiera49]

I really don't know why I'm on palliative care, I am not getting support from palliative care team in fact I dont have anything to do with them. Only have treatment and oncology appointment.

[Hidden]

I used Pallitive care shortly after my diagnosis at my doctors suggestion. Their nurse and doctor were wonderful. They came to my house several times and not Only checked on my physical well-being but also my mental well-being. They were the ones to help regulate my pain meds and to help me with all of the side effects of my meds. I found them much more helpful than any of the oncology team. When I got things under control and could get around better i told them I wouldn’t be using them. They told me to just call if I wanted to start it back up again.

Have they been to your home to do any of the things they did for me? Call them and ask. They are a wonderful team (or at least they are here )

[Kiera49 in reply to Hidden]

No they have never been to my home and not on pain killers, did go to hospice at start for breathing course and circuit training but they discharged me said I didnt need them

[Hidden in reply to Kiera49]

Do you want them to come to your home and visit you ? In some places they put you on the list so if or when you need them you are already signed up.

[Kiera49 in reply to Hidden]

No I dont really need them just wondered why my records say I'm on pallative care when I'm not

[Hidden in reply to Kiera49]

They likely added you on for the future. Just ask your oncologist.

[Mariote777 in reply to Kiera49]

In our case we were put in palliative "status" because our cancer was staged as "incurable" when it mutated to tnbc. Yes, I know ALL cancers are incurable but at early stages there's the possibility of long time remission from surgery-radiation. But once in advanced stages or with known-aggressive types such as triple negative, even when the patient is RECIST 1 they are in "palliative" treatment. Designation is rather depressing. Having to read it time and again in every report and having to hear nurses and staff "oh yeah, Ms. so and so, she's in palliative chemo"...

[Hidden]

Hi Tracey,

It would seem that as you have visited the palliative care team at the hospice in the past that your records have not been updated. So that is probably why it says you are still having palliative care, when in fact you are not. Perhaps you could give them a ring and let them know that you want your records updated.

I visited St Nicholas Hospice for six complementary therapy sessions after my diagnosis, as I heard that cancer patients were able to access them for free. Like you, I wasn't there for pain management or anything like that. I just liked the idea of a little pampering! I also really liked my complementary therapist and enjoyed spending time with her. I felt a bit down when my complementary therapy sessions ended.

Sophie

[Kiera49 in reply to Hidden]

Thanks Sophie I will do that, glad you had a bit of pampering you deserve it, might as well take advantage of free stuff

[Hidden in reply to Kiera49]

Thank you! That's what I thought too. We have to put up with enough as it is, so when I found out about the pampering I signed up for it.

Sophie

[Buffwright]

My understanding is that when we have MBC, all treatment is considered palliative. Actual palliative care is a bonus if you want/need it!

[Hidden]

I joined a Centre for Cancer patients shortly after diagnosis last year. I also had McMillan nurse designated to me and a Cancer nurse from my GP Surgery. They are just there to help,you through the good times and the bad. That came under Pallative Care as well. I didn’t need them either but did have Reflexology, Chiropody and help of a Dietician. The Centre is temporarily closed for obvious reasons. I can call in there any time for a chat and coffee. Hope this helps.

Cheryl

[Kiera49 in reply to Hidden]

Yes it does thanks , I only see oncologist, nurse for treatment and GP surgery for blood test, maybe will need more support in the future, feeling good today last year couldn't do much, now I can do 6 km on exercise bike and play swingball with my son.

[Lynn-in-California]

Are you confusing palliative care with hospice? It was explained to me that once you are stage four ALL TREATMENT is considered palliative (rather than curative). I have been stable on Ibrance and Letrozole for four years. It is palliative treatment since stage four is a terminal condition, not something that can be cured.

[Kiera49 in reply to Lynn-in-California]

Thank you, I thought that could be one explanation, but was hoping not, so thank you

[Dianne417 in reply to Lynn-in-California]

That is so fabulous! I wish I could have lasted four years on my Ibrance/Letrozole combination. Good for you! I hope it continues!

[Dianne417]

I have to agree with Buffwright and Lynn-in-California. I was told at the beginning of my Stage 4 diagnosis that I would now be on palliative care, because I had a condition that could not be cured. The goal of palliative care is to keep patients as comfortable as possible. This is not to be confused w/hospice care, as I'm not there yet. Things may be different in the UK, but here in the States, all of the cancer care I receive is considered palliative. The term palliative is also used in reference to a variety of conditions other than terminal cancer that cannot be cured, but only managed.

[Totheriver]

I was also referred to a palliative team... they are great for emotional support and pain and symptom management. I use them last summer and fall but am doing ok right now so they are not coming at the moment but I can call when I need them again.

I also receive my scan results at 9:30 this morning which is making me anxious...

[mariootsi in reply to Totheriver]

Hope you received good results. Thinking of you. Let us know.

[Kiera49]

Hope your results were ok, all the best thank you for replying everyone

[Totheriver]

I just had a call and my results are stable💕

[Kiera49 in reply to Totheriver]

That's brilliant

[Justme153]

WONDERFUL!!

[Hidden]

Great news, Kiera49! Thanks for sharing!