Palliative care

Hi all. Am I the only one under palliative care here? I think I'm going to go mad. It's on my mind since yesterday when I met with the team. Why do they want me to go see Milford , ( hospice ) Not sleeping again my mind is racing.

[Lizchips]

I had to read up on palliative care, I guess some Drs start it at diagnosis. To help people manage there illness. Tell your Dr your not interested in this. There was a lot of things I said no too. I was diagnosed in 2014, April 18 will be 4 yrs for me. I read often but also I have to have breaks. It is depressing at times. I like to live positively as much as I can. Ask your Drs if you are going to get chemotherapy treatments ask about stomach wash or also called IP chemo. Intreparatineal chemotherapy. It's supposed to add 18-3 yrs onto your life. Keep reoccurrence at Bay. I'm stage 3c, I have clear cell ovarian cancer. I've learned one thing and that's you have to be your own advicat . If you don't want or feel you need it. Tell the team no. Be strong, Liz

[Neona57 in reply to Lizchips]

hi Liz, I also have 3C clear cell and know that I am getting standard treatment for serous type which is not working. I seem to have had less treatment than anyone else I have read about. I have booked an appt to see a dr in London but can't get hold of my medical records from the hospital-have been in hospital for 4 days with breathing problem waiting for oncologists to see me but no one has come.with recurrence within 3 months of frontline I don't feel I have much time.

[Friscok12 in reply to Neona57]

Iam in the same situation as you since it has come back so quick am platnuim resitent been on weekly taxol didn't work now on weekly cisplatin had first yesterday been sick all night but have to keep fighting xxx

[Lizchips in reply to Friscok12]

I had a hard time with cysplatin, carboplatin is sister drug wasn't sick. As soon as you wake take antinausea meds. Even if you feel ok. It will help. Need to take prior to getting sick. Best regards, Liz

[Hidden in reply to Lizchips]

Thanks Liz

I feel every time I see them they are pushing Me towards the hospice. I'm not ready to go there yet.

Ann Nora 🍀

[Lizchips in reply to Hidden]

Tell them you are not interested. I probably would not be either. My friends and family were my support. Maybe look for other DR that is on same page as you. Best regards, Liz.

[Sherryross in reply to Hidden]

Search for clinical trials. Mine was called palliative care and now I am starting a clinical trial that has great promise. Never give up

[Zena41 in reply to Lizchips]

Hi I know what u mean about asking or u don't get or get told. I've heard about hides but not sure ...? Do they have it in the U.K. ?

[Zena41 in reply to Zena41]

Sorry meant hidec , do they have it in the U.K.?

[CallmeMum]

Hi lovely,

No you're not the terms palliative and terminal have very different meanings to what everyone assumes they do mean 'end of life' as we all know but they're also used for....

Palliative care is a multidisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. It focuses on providing people with relief from the symptoms, pain, physical stress, and mental stress of the terminal diagnosis.

Terminal also means incurable like type 1 diabetes that's terminal as it's incurable or there's no known cure you can be terminal for years and still live a full life as plenty of ladies on this site do Katamal often posts she's 10 years from initial diagnosis which gives my special person hope xxx

[Hidden in reply to CallmeMum]

Callmemum,

I wonder why you gave yourself this name? You have explained everything so clearly. Thank you

I'm tired not sleeping and was thinking the worst as we do when it's late and your still awake.

Ann Nora 🍀

[CallmeMum in reply to Hidden]

The name comes from the term 'Mums the word' when you don't want people knowing who you are or connected with my husband works in the security industry so we're kind of over the top with security on anything and everything which is why I never post my name. Also keeps my special person on her toes when she posts stuff 😉 Xxx

[Hidden in reply to CallmeMum]

😆 I see, thanks hun. Ann Nora 🍀

[Sherryross in reply to CallmeMum]

That's true I am terminal palliative care the whole deal and it's been over two and a half years and I am still here!

[Lily-Anne]

Palliative care, yep those words made me sit up too. It just means not curative. A hospice isn't what you imagine it definitely was a positive experience. I was referred for pain management, the doctor was lovely the environment was peaceful and she gave me lots of great advice. I can email her if I need her help or to go back.

We do have to be proactive with our treatment but please don't let their terminology put you off taking advantage of facilities

LA xx

[Hidden in reply to Lily-Anne]

Hi LA,

Yes it's very scary, my mother died in a hospice before there was any palliative care, it wasn't nice, I felt they killed her off.

I know things have changed and they are there to help with pain relief, but I don't want to go see it yet. I'm not ready.

I have agreed to have one of their nurses come to the house for support.

I'm not in a good frame of mind at the moment.

So glad I can let off steam here.

Ann Nora 🍀

[airfemale]

I am under Palliative care I just imagined we all were. I have nurses visiting once a week to discuss my symptoms. I am five years on and because it is terminal I have had so much help offered to me. It isn't scary it is comforting because I am not alone in this. Relax, these are only words. You can decide what you want. Sharon

[Hidden in reply to airfemale]

Thanks Sharon,

That's the way I feel, scared.

When they start to visit the house I may feel better.

Ann Nora 🍀

[Yoshbosh]

I saw a 'palliative care' dr when I was first diagnosed as totally freaked out, but as the other ladies have said, palliative doesn't necessarily mean there's nothing more they can do for you or it's the end of the road, it's about quality of life as well.

The dr I saw explained that it was her job to make me comfortable, and in my case, it was the oncologist's job to deal with the cancer. She wasn't there because no more could be done for me, she was there because I needed help. Most patients she sees also freak out when they meet her for the first time. It's a shame really, because she was lovely!

[Hidden in reply to Yoshbosh]

I'm as stage 4, no op, very rare can't even decide what to do next.

But my pain is under control and they have been great with that.

Thanks everyone for listening to my ranting and ravings.

Ann Nora 🍀

[antifer1234 in reply to Hidden]

I too am stage 4 with no op. My onc. Said as I was responding so well to treatment and was well she didn't want me to have a long operation and all the risks that go with it. I am 72 years old and just 12 months after diagnosis. I read about all you ladies having the op. And wonder now if I should have had it too?? But then I have had 12 months with a good quality of life. Do many ladies not have the op. I wonder any thoughts or similar experiences out there??

[Hidden in reply to antifer1234]

Hi there,

I am stage 4 and have not had an operation. My oncologist did not even know how to treat me as my cancer is so rare.

I got a second opinion and they also said an op was not even an option. But did recommend hormone injections which I'm doing now.

The things is also I had a full hystorectomy / salpingo oophorectomy 17 years ago so there's nothing in that area to take out. I was also told that my tumours were too near my kidney and one close to my bowel.

If you are responding well to treatment without having an op then you are doing ok.

Hope this continues for you, take care

Ann Nora 🍀

[antifer1234 in reply to Hidden]

Thank you for the reply. Keep well.

[Cropcrop]

I can't add anything to all the excellent advice you've already been given. Just wanted to send you big hugs, you'll be ok ❤️Xx Jane

[Neona57]

I was referred to palliative care before my op -to try to help control my sickness.

[Di16]

Palliative does not always mean that life is nearly over. Before I had my first chemo, the doctor asked me to sign a form to say I realised that all my treatment would be palliative, not curative. That was about 4 years ago. A few months later, I was visited by a Macmillan nurse, who asked me to start going to a day centre at our local hospice once a week. I didn't feel ready for that, so didn't go. I was shocked at first to be asked to go to the hospice. But I agreed to go to a coffee morning there, & found it a bright & welcoming place. I later went on a positive living course they have there for cancer patients, & had a chance to look round & ask questions. I haven't been back for a long time now, but have been told I'm welcome to go back if there is anything they can help me with. The thought of going there when I need to no longer worries me, & I 'll probably go to one of their coffee mornings sometime soon to keep in touch. Di

[Hidden in reply to Di16]

Hi Di,

So you understand I was shocked also. Maybe in a few months I will drop in and see the place.

Ann Nora 🍀

[annieH1]

Hi Annora,I'm also on Pallative Care since 2015.Its absolutely brilliant and both my family and I would be lost without it.The team works in conjunction with your g.p and Onc team ,to ensure you have the best quality of life as possible.It does not mean "your dying", it means you have extra support to live a better longer quality of life.It has been proven that Pallative care as well as g.p and Onc team can prolong life by up to 2 years without chemo treatment.

On diagnosis I was stage 4 advanced,inoperative and incurable so was given Palliative treatment which incl chemo ,avastin .That was 2014 and now due to new treatment for BRCA positive patients, I am doing very well on that.

So Take heart and remember Hospice isn't for the dying but for the living.xxxx

[Hidden in reply to annieH1]

Hi Annie,

I hope you have a long and happy life.

Would you believe I have not seen my GP since I got sick. I only deal with the hospital if I have a problem or now with the palliative care team.

I am also stage 4, inoperative and no cure. Are you in UK, I don't think we have as much available to us here in Ireland.

Thanks

Ann Nora 🍀

[annieH1]

Hi Ann ,no I'm in Ireland would you believe 😀☘️

[Hidden in reply to annieH1]

Wow that's great,

[kat98116]

When I first started chemo in May I was having a terrible time managing the symptoms. They assigned a palliative care doctor to my case. He stopped by each week during chemo and we came up with plans to manage the constipation, nausea, and other symptoms caused by treatment. He was wonderful, and the best listener I have ever met. It really helped. I, too, was freaked out by the term "palliative" but here in Seattle, USA, at least, it definitely does not have to mean you are dying.....I also had a social worker who was part of the palliative care unit and she visited me for impromptu counseling during chemo treatments. I felt very supported. Here, at least, visiting a hospice was not part of the picture for me.

[Hidden in reply to kat98116]

Hi kat,

I immediately associated the term palliative care with end of life.

This is what freaked me out and I was very upset, I did not want to mention it even or talk about it.

But I'm sure glad I did now, everyone had been so helpful.

Thanks again to all.

Ann Nora 🍀

[Lizchips]

This wasn't an option for me, I too would probably prefer to handle things on my own. But I do see some benefits. Good luck, liz

[kristinaapril]

My mum was given the option of palliative care if she needed it. However, since chemo took away her ascites and she had no real symptoms from her chemo, she never truly utilized it. We both did participate in some coping and stress reducing seminars provided by the palliative care team though.

((sending hugs))

Kris x

[Hidden in reply to kristinaapril]

Kris,

You've got the nail on the head there, I'm feeling very stressed out and I understand now that I was feeling pushed by everyone, when they were only trying to help. You know when your tired and sick you don't see things clearly.

I am feeling a bit better, thanks everyone.

Ann Nora 🍀

[Nacoates in reply to Hidden]

Don't stress, I'm on avastin and it causes anxiety in some people, I thought I was going crazy until I realized. So I literally spent two months thinking I was on my last legs until I figured it out, now I just breathe through those moments. Sickness, tiredness, new pains, drug side effects all make us crazy😀

[Irisisme]

Hi Ann & others,

I find the terminology used for OC really confusing but our local Hospice (Colchester, U.K.) helps anyone with an 'incurable illness' - and that's all of us, even if we gave years of remission (I think!). I used to think of them as just for those who were dying but that's not so. I get free reflexology and reiki sessions there, and have recently started going to an art group - it was fun! My advice is "don't turn down any help until you've tried it". I used to think differently but OC changes you and I am happy with the changes in how I view life now.

Love to all, Iris xx

[Hidden in reply to Irisisme]

Thanks Iris,

I think I'm seeing things more clearly now that I finally got a good night's sleep😴

Ann Nora 🍀

[Hidden in reply to Irisisme]

Love your dog.

Ann Nora 🍀

[Irisisme]

Aren't dogs wonderful, I have 2 🐺🐶

[Hidden in reply to Irisisme]

Mine is Poppy I love dogs too. U know what they say about people with no kids?and dogs yes she's my baby.

Ann Nora 🍀

[Irisisme in reply to Hidden]

I have Alfie, the mischievous terrier, and Buster, the calmer shi-tau. Yes, they are my babies xx

[Hidden in reply to Irisisme]

Yes iris,

Poppy never leaves my side, she even sleep's on the bed between me and my hubby. If my husband hugs me she has to get one too, they are so funny.

Ann Nora 🍀

[Nacoates]

I'm under palliative too and I love it. Can call nurses 24 hrs a day for advice, can be months between visits, also they have access to services that can free up your energy and time. I'm going to get someone to wash my floors once a week, it's great, frees my energy up for my kids. When they try me on new medications the girls can give me all the info I need, it's a positive thing 😀😀

[Hidden in reply to Nacoates]

Hi,

It sounds great someone to do the housework, I have to say I'm very lucky my husband does everything in the house he's brilliant.

Ann Nora 🍀

[Nacoates in reply to Hidden]

Just the help for me is great as I have two young children so even though I'm capable of doing everything, the choice to use palliative services means I have 200% energy for my family, and palliative is all about giving you great quality of life😀😀

[PhillipandBettykid]

I have been under palliative care and 'terminal' since diagnosis. I now know that it is really an elastic term and doesn't mean you are going to die immediately. One of the nurses told me it was about living with cancer rather than dying with cancer. I go to the hospice daycare centre every 2 weeks. It is brilliant, a bit like this site we encourage each other and spend a lot of time laughing. It all helped me after the first chemo finished when you can feel a bit abandoned. Now I have started chemo again, they are on the end of the phone with help and advice. Yes hospices can be a good place to die but really they are about making our passage with this disease better and making sure we get the best quality of life that we can.

[Hidden in reply to PhillipandBettykid]

Hi, thank you for your insight into palliative care. I have accepted this help now and I do feel better after meeting with the doctor and her team. I'm getting great support although I am still undergoing treatment with the oncology unit.

My quality of life is better both in body and mind due to this care.

Take care

Ann Nora 🍀