topic Re: Palliative care in Facing end of life

Palliative care

vinouche — Thu, 18 Mar 2010 19:03:31 GMT

Palliative care is what I have been offered.I went from feeling fine, just a lump in my neck to being told three days later that all they can do for me is make what is left of my life more comfortable and see if they can prolong it a bit. So I feel fine, I look fine, second cycle of chemo was pretty unpleasant but nothing as bad as I have read from some of you lovely people, the outcome is my tumours have shrunk drastically. I still have my hair, some of it is falling out but not that much. I have read about stage 4 lung cancer, the prognosis is very poor, but I am struggling with reconciling my lack of symptoms with the gravity of my situation. No wonder my middle son is in denial, he does not comprehend it when he sees me looking so "normal". I think the morphine patches are hiding most of the pain, I do get some from time to time so just take a tablet. I have to admit I am petrified of what is to come. I know it will get much worse, and I think I would be willing to put up with what some of you are putting up with if there was a chance of cure. I do not want to know how long I do have, but I do want to be prepared for what is to come, what to expect. I would welcome any comments, or insight any of you may have. There does not seem to be many lung cancer sufferers in this forum, and I therefore feel a little lonely. I thank you all for reading.

Re: Palliative care

WishingStar — Thu, 18 Mar 2010 19:29:09 GMT

Hi vinouche, Sorry, not a lung cancer patient, just wanted to say, glad that you are feeling a little better for now. Although that in it self has brought you a new lot of feelings and emotions to deal with. Stay strong. Nicole

Re: Palliative care

Jules2 — Thu, 18 Mar 2010 23:51:46 GMT

Hi vinouche ... i think if you contacted the cancer council help line 13 11 20 they would be able to provide you with the information you are seeking or at least point you in the right direction to get the answers. You are doing well by the sound of things and trying to deal with a lot ... dont do it alone, there are people out there who can and do help us through all of this. Thinking of you. Julie xo

Re: Palliative care

vinouche — Fri, 19 Mar 2010 00:22:31 GMT

Thank you Julie, I haven't managed to bring myself to ring the cancer help line yet. I find it really hard to talk, but easier to type. It is all so scary. Sylvie

Re: Palliative care

Jules2 — Fri, 19 Mar 2010 00:50:14 GMT

Hi Sylvie I can relate to that, the not being able to talk bit. One baby step at a time and as you are ready. Nothing has to be done in one great chunk, so to speak. I think that we often do things when we are able to face them or cope with whatever it is. Writing is a great way to start and i think there is something on this site under another tab (from up the top of the home page) where the cancer council has some links on written material. I will go take a look for you and get back to you. hugss Julie xo

Re: Palliative care

Jules2 — Fri, 19 Mar 2010 00:57:04 GMT

Hiya sylvie Ok, if you go to the home page on this site. Click on links and then further down you will see different options. There is a link you can click on which takes you to the nsw cancer council place, whereby you can read further. See if that is any help to you and if not get back to me here or email and i will have another look around for you. I know we dont have the same cancer but i think with a cancer diagnosis there are the same if not very similar issues and fears that we all face. On this site everyone is very supportive of one another, so i hope you will find it of some comfort to you. :) Julie xo

Re: Palliative care

vinouche — Fri, 19 Mar 2010 01:34:54 GMT

Thank you again Julie, it is nice to feel I am not alone. I think I need to ask my oncologist more questions, I am just a bit scared of the answers. Sylvie

Re: Palliative care

Jules2 — Fri, 19 Mar 2010 01:40:31 GMT

Sylvie ... you defnitely are not alone. Do you have someone who can go to the oncologist with you? If you dont want to ask a friend or family member, you might be able to ask the cancer social worker from your hospital to go with you. There is a lot of help and support out there available to us. Sometimes we just dont realise what is available, i know i didnt and have learnt a lot from this site and the people on it. Asking questions is a scary prospect, especially when we know we are not going to like the answers we will get. You will do it all when you are ready and able to deal with it all. Julie

Re: Palliative care

vinouche — Fri, 19 Mar 2010 02:38:36 GMT

Yes I do have friends that go with me, but as you said it is harder when we know/think we won't like the answer.I am seeing oncologist next week before next cycle and have written some questions for him to make sure I do ask them. Knowing me I will either forget the paper or will be too embarassed to ask them. I am more fortunate than most is that I do have support from family and a couple of friends, but they do have a life and I am very conscious not to ask too much of them.

Re: Palliative care

samex — Fri, 19 Mar 2010 04:37:25 GMT

Just coming in on this Julie and vinouche. Never be embarrassed to ask questions. Your oncologist should make you feel comfortable enough to refer to your notes. I also know how you feel about not wanting to burden your friends. They may surprise you and be grateful that they are able to help you through this.I had a really good couple of friends who were always there and told me that they were glad that I thought so much of them that I asked them for help. One thing cancer does - makes us a little more humble i think. Take care, Samex

Re: Palliative care

vinouche — Fri, 19 Mar 2010 04:51:25 GMT

Thank you for that, I guess another thing for me to learn is that as I lose more of my independence, I will have to rely on these good friends to help me. It is so much to absorb and rethink all the time. Sylvie

Re: Palliative care

Jules2 — Fri, 19 Mar 2010 10:39:40 GMT

Hey Vinouche You are doing a great job by writing down questions and we all have those absent minded moments so dont feel embarrassed by that. You are having to deal with a lot ... once again, take baby steps and just do what you are ready to do. I decided that i would be mindful of things that i need to be mindful of but i would cross bridges when i needed to. I just try and break things down so that i can cope and deal with things. Julie

Re: Palliative care

Fri, 19 Mar 2010 22:44:13 GMT

Hi Sylvie, My heart and thoughts are with you. I agree that it is hard to talk - I am a cancer survivor and my dad has a terminal diagnosis. I find typing my best therapy. The only person I can actually talk to is my husband, anyone else I get really teary with. My eldest daughter is a Psychologist who works with children and she frequently does art therapy with them. Apparently it not only helps the kids but it also helps her when she is struggling. I saw on someone elses blog about an art therapy group for kids but I would suggest it to adults too. I can't draw or paint to save myself (my horse looks like a scarecrow!) but I don't think it matters. When you go to the doctors, take a photocopy of your questions or maybe even get your list of questions to the doctor before your appointment, then he/she will have a better understanding of where you are at and how they can help. Try to list what you feel are the most important questions at the top of the list and take someone with you (if you are comfortable) - two sets of ears will take in more than one. Don't forget to spoil yourself, indulge when you can and be loved as much as you absorb. Katie 🙂

Re: Palliative care

vinouche — Fri, 19 Mar 2010 23:26:12 GMT

Thank you Katie, I had forgotten that I always wanted to learn calligraphy, and you have reminded me of it, so I will see if I can find a course near me. I am taking someone with me for the simple reason that I know I will forget what the doc says, and also for support. Thank you all for the support, I feel better knowing you are around. I have almost tidied all my affairs, and can now concentrate on improving my health for as long as I can, anf enjoy my family. Sylvie

Re: Palliative care

Sat, 20 Mar 2010 00:27:18 GMT

I think that everyone should have a "to do" list. I have just added "learn to ride a surf board (at the beach)"...I had to add "at the beach" otherwise I might cheat! Calligraphy sounds fantastic. Had you thought of writing your "Good Life Story"? I have asked both mum and dad to write down all the good things that have happened in their life...like how they met, the day of their wedding, their school life, their best adventures, the funny things that their parents taught them, in fact anything good about their lives. Not only would I like it but future generations will love it too. I am also getting snippets of the excitement as they were growing up, all different for everyone. My husband and I are also about to start a journal of the great things. Anyway it is just a thought and a good trip down memory lane...If you are up to it, why not tell eveyone about your best memories? I wish you well and if I can help with anything, please let me know. Katie :) p.s. I think I might need a spell check section on this website! I get carried away with the typing and often don't see the errors! Oh well...does it really matter?

Re: Palliative care

vinouche — Sat, 20 Mar 2010 00:57:19 GMT

Yes I have 2 books under way, one about my life in 3 different countries (I am French) and the other is amusing annecdotes about how to handle my two adhd boys ( now grown up). I thought it would be good to hae a feel good story forum here, with funny or nice stories not necessarily to do with cancer for when we feel a bit down, it is always good to have a laugh.

Re: Palliative care

Sat, 20 Mar 2010 09:33:53 GMT

What a great idea! Where have you travelled? Furthest I have been is to NZ! I would love to hear your stories if you have the time. Feel free to share some of your adventures and annecdotes with us whenever you want. I agree, we all need to laugh. Have a great night! Katie 🙂

Re: Palliative care

vinouche — Sat, 20 Mar 2010 11:00:35 GMT

I was born in France, migrated to Oz aged 14, lived in Melbourne for 11 years, migrated to NZ and lived there for 25 years, came back to Melbourne 3 years ago.Love all 3 countries.

Re: Palliative care

chris_martin — Fri, 26 Mar 2010 09:20:06 GMT

Hi Sylvie. Like you I find it very hard to talk about my 83 year old dads cancer but I did ring them about 6 weeks ago and they sent me out a package which included a relaxation tape -I really think that has helped me heaps. Before the tape I could only sleep for short periods but since playing their tape I seem to go to sleep fairly quickly and have a decent night (5hr) sleep. I know all the same scary thoughts are there through the day but I really urge you to ring Cancer Council helpline as they as well as this site are helping me so much. Take care Chris

Re: Palliative care

deejjay — Thu, 15 Apr 2010 22:03:03 GMT

Hi Vinouche Firstly sounds like you're doing all the right things writing down your questions, writing stories and considering getting involved with caligraphy. Good luck with your next oncologist appointment. Also given what you've been told by your oncologist I think it is very important to let your friends that don't already know know what are going on and ask for their support. Perhaps prior to speaking to all of them, including both that know and don't know, work out what support you need, it could be practical ie driving you, provision of meals, shopping, cleaning, coming with you to chemo or when you see the oncologist or could be emotional ie spending time together doing enjoyable activities, them doing the extra leg to come to you, a convenient to you location etc so you can be clear about that as people often don't know what they can do. Also remember to make use of any health/govt services that can make your life easier as you need them, for example, meals on wheels, cleaning, drivers so you can call more on your friends for emotional support (although some people like to do practical things for their friends to show that they care) if their time is limited so the time they they spend with you can be doing something fun. Good luck and hugs from Deejjay