Posted by Miche on Jun 27, 2020 4:59 pm
Posted by WestCoastSailor on Jun 27, 2020 9:27 pm
I feel the despair in your post. While I'm a male breast cancer patient, it isn't that that is going to take me out. It is Stage IV lung cancer. When my initial diagnosis was given I was told that 50% of folks at diagnosed at my stage made it to 17 months. I did my will, spent time telling my family and my children what my last wishes were and then settled into treatment. My oncologist telling me it was an aggressive treatment with a curative goal seemed like a cruel joke.
I thought things were going pretty well. I went out and bought a new laptop. Then I was told he was seeing progression ten months in. It took a few days for it sink in. And then we started on another treatment that so far has kept me stable. I"m two years in now and loving life. I'm headed for scan results meeting on Monday. As I said to my caregiver today I have a sense of impending doom. Yup good old scanxiety. Nothing physically to base it on but the emotional weight can be daunting.
So the question I hear in the midst of the despair is how do I have hope? I make a lot of jokes about having an expiry date. And that is part of my reality. But I find little things to live for. I love creating. I read a poem at the prestigious Poet's Corner Open Mike. I'm working on Malcolm Gladwells 10,000 hours to master a new craft - I've taken up watercolour painting. If I don't keep working on it I'll never master it. Ach the truth is I'll never master it but I'm still trying.
But a real secret for me has been relationships. Conversations that drag on for hours that give people inspiration. ( How many cancer patients does it take to screw in a light bulb? Ten. One to do the job and nine to be inspired.) A sense that my life matters, makes a difference, is part of it too. That comes from a deep spiritual place.
Look after yourself. Eat well, sleep well, and exercise. Recognize that we all have s*** days. And we need to wallow in them and feel them. Then move on. Cause the journey is calling, beckoning us around the next corner.
Like the childhood rhyme:
The bear went over the mountain.
And all that they could see,
And all that they could see.
Was the other side of the mountain.
Was the other side of the mountain.
Let me know if I can tell you any more bad jokes or just share how crappy this journey can be sometimes.
Posted by Miche on Jun 28, 2020 9:03 am
Posted by Lyne on Jun 28, 2020 9:16 am
I had introduced myself in 2017 as a 57 years old woman battling breast cancer. I underwent 8 chemo treatment (AC/T), double mastectomy with no possible reconstruction and 25 radiation treatment I was stage 3 with lymph nodes involvement.
I went into this with blessed ignorance, believing that I would beat this. Many scans and medical forms were completed, and I realized that my MO had not given me the whole story. I was in fact diagnosed with metastatic triple negative BC. It was a shock and I believed then that I was done. After a bout of serious "poor me" time, I rallied on and did my best to move forward.
I followed all instructions, got better, returned to work and felt pretty smug about my "success".
Last November the cancer returned, breast to lung. I am in treatment (weekly infusion of Taxol) and hoping that albeit I will not be cured, I can lead a good life for as long as I can. Like WestCoastSailor , i try to remain active and get my house in order. It's not always easy, but i allow myself small pity parties then really on.
i surround myself (while self-distancing 😁) with people that I love and that truly love me. I have no time for the curious to watch my train wreck, I only allow those who are a positive resource into my life. And I am very lucky to have a loving family and strong, caring friends. They are my support
Although the will is done, special letters and momento are set aside and I work daily on savoring life and creating memories, there are moments where it is just to much and my "expiry date" looms very large on the horizon.
I am a palliative care patient and as such have access to resources to help me through. I have a great care team and as strong counsellor who makes me think, and I call upon them when needed.
My husband and I have started reading a booklet from the Cancer Society called Advanced Cancer. It is helpful as it forces us to have yet many discussions and to clarify what I really want as well as his needs. Worth the read.
Each of us finds solace where we can, but one thing that I find helpful is to work on enjoying each day, each person and my peace For however long I have. I set myself small goals and when reach, I celebrate!
it's not an easy journey, but I keep my sense of humour and work through the difficult moments as best as I can.
It's a grieving process... and I'm living it!
I hope that you will be able to find your happy place, accepting what cannot be changed - we all have an expiry date after all - and live your life surrounded by people who love you, care for you and support you. There is much power when we feel that we do control how our life is lived.
I am here, as are many who will listen and care for what you have to say... no censure required. 😁
Posted by Miche on Jun 28, 2020 10:33 am
Posted by WestCoastSailor on Jun 28, 2020 11:06 am
Lyne and Miche
Here is a link to the pdf version of the Advanced Cancer... https://www.cancer.ca/~/media/cancer.ca/CW/publications/Advanced%20cancer/32043-1-NO.pdf
We have fun with the Palliative care words here. We fondly refer to them as the "Death Squad." And sometimes they are. Personalities and perceptions are everything. Sometimes in the middle of the struggle they can be brutally efficient overriding the emotional impacts of the challenges that metastatic patients face. More seriously the job of the palliative care team is symptom management. A good palliative team comes in early and helps with pain management and tries to keep an overall perspective on comfort. Including social workers, doctors, nurses, pharmacists and psychologists, the goal is to provide quality of life when dealing with difficult symptoms and side effects.
I have it as a standard menu item on the list of questions every time I meet with my oncologist. He keeps telling me that though I am metastatic it's too early. Something we disagree on. But I'll accept his judgement and keep asking. My experience is that the team is often engaged too late. That forces some decisions that may not be in line with what we want.
But the really big question is as you pointed out is the hope question. I see that you have joined the spiritual forum and I'll drag my sorry butt over there and have a more personal discussion. But for those who read this and don't want my answer tainted by religious stuff, I think that a search for meaning is honored. Call it karma or the universe but purpose comes from looking for it. And if you have read some of my posts on this subject you may have already run across a post that references a poet's take on Hope. Emily Dickinson is pretty eloquent. I really should post it around my apartment somewhere.
“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -
I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.
It speaks to the importance of finding it and gives a few clues as to where ti find it I think.
Thanks both of you for responding so positively to my rambling thoughts.
Posted by Lyne on Jun 28, 2020 11:48 am
Miche , depression, which staying under the covers is often a sign of, is a normal part of our journey. Although I have a few months of living with my new diagnostic, there are days where I can only lay on the couch and binge-watch Netflix. And it's okay, I allow myself these moments because they are part of this. I reached out to the counsellor because it was too big of an event for my family and I to face alone. I needed the support, the words of encouragement and the smiles. In fact, I deserve them. Just because I'm dying (and again, aren't we all?) doesn't mean that I shouldn't be happy. Perhaps through your team you can find someone to connect and who can help you process your feelings without judgement. Work benefits have these services too but I find that people working with cancer patients have a better understanding of what is going on without my having to explain it all.
As for palliative care, I thought that it meant "end of life" but in fact, to me, it just means having a strong and experienced team on my side to guide me and my loved one as I manage through this. I now understand that they are in my life to help me have a greater quality of life and i am thankful for their assistance. I think palliative care is equal to caring when a person do not have a curative treatment for them. I was lucky, as, unlike your situation WestCoastSailor, I required daily nursing care at the beginning and was referred right away to the palliative care in my area. Miche, read the pdf that Angus posted (thank you! Easier that way) I did alone the first time and now with my hubby, it answers a lot and will help you prepare questions for your oncologist or team. Getting answers is helpful to me as it gives me control.
Questions asked in this group are answered by people who are there and understand. That's a bug plus when it all seems too much to manage ❤
as for your question "how long does one do it?" The obvious response is likely as long as I can. That was my answer, but with a caveat... as long as I have a good quality of life. Right from the start, I was very clear that I will follow the treatment protocol they believe buys me time, but there is a limit as I will not be an overburden for my loved ones and I will not suffer. I now carry a DNR, and so does my husband, as I'd hate to die of a heart attack and be resuscitated to be told that I will die again. That's me, right now. My close friends and family know my wishes and are respectful of it.
I hope it helps a bit, but know that you are the only one who can make these choices, people have to respect where you're at, even if they disagree. It's your life, make the most of it 🤗
Posted by Miche on Jun 28, 2020 12:10 pm
Posted by Lyne on Jun 28, 2020 1:04 pm
your cancer team or centre should be able to provide you with resources. People specializing in non-curable cancer patients are available .
I'm glad that you find this helpful, I tend to rattle a bit long at times LOL
Have a wonderful day!
Posted by Kims1961 on Jun 28, 2020 10:16 pm
Your story reminds me so much of a friend i have, who also has MBC. She and I used to talk about “death” prior to our cancer diagnosis. It became harder once we had cancer, as people sometimes try to make you feel ”better” by saying - don’t think like that or you’re not going to die? Really...we are all going to die. Sometimes preparing ourselves for the “end”, helps us with the living. We can have a good life and a good death.
Having MBC can mean many different things. There are still possible treatment options - some people continue to live on with treatments that “manage” the cancer rather than cure it.
There are some excellent people that can help us with the mental health part of the cancer journey. This is SO important . Lying in bed- not able to get up- is a response to the news you have been given. It’s ok to not be ok. The trick is to not stay stuck. If you are finding your thoughts, emotions continue to interfere with your well being - there may be a social worker you can talk to at your cancer clinic, family doctor’s practice or local community agency.
Please keep us posted on how youre doing. We are here. Kim
Posted by Miche on Jun 29, 2020 8:59 am
Posted by QuarantineAndMe on Jun 29, 2020 9:27 am
I also have MBC in the bone. I was diagnosed with my first lump 4 months ago. I had a mastectomy and thought I was done but unfortunately it turned out that the cancer had spread to my spine.
Its a journey and not easy. Use all your resources available. Call the Canadian Cancer Society - - I did, several times, and the ppl I spoke with were so helpful and willing to listen. They gave me some useful resources.
Check your hospital. Usually they have a social worker there to help cancer patients. I scheduled a call with mine and she was wonderful. Again she gave some great resources and it was such a relief to talk to someone who worked with other cancer patients and could guide me through some of the questions I had.
Example is that my insurance company wants me back at work - - and mentally I'm not ready. I went from a stage 0-1 diagnosis to stage 4 in three months so it did do a number on me. She helped with strategies and a plan so I can extend that time off.
I wish you all the best on this journey.
Posted by QuarantineAndMe on Jun 29, 2020 11:09 am
My cancer is ER PR + and Her2 neg. So I'm on Tamoxifen. They are working to shut down my ovaries to push me into menopause. Once that's done I'll move over to letrazole and Ibrance. I'll also be getting xgeva bone infusions to strengthen my bones. But each person's cancer is so unique to them so treatment for me may be different for you. What an second referring oncologist did tell me is that the prognosis for stage 4 breast cancer to the bone is very good all things considered.
I never had chemo or radiation - - I skipped all the stages and zoomed straight to stage 4.
Posted by Lianne_adminCCS on Jun 29, 2020 12:23 pm
I am sorry to hear of the shift in the diagnosis for you both. I am glad though that you have connected, not only with each other, but some of the other incredible members we have here.Living with an advanced cancer diagnosis can still be done. I know of women with MBC who have been living with it for 8 or 10 + years.
WestCoastSailor provided the link to the Living with Advanced Cancer booklet above.
I also wanted to provide the number for our Cancer Information Helpline 1-888-939-3333 who can answer some questions you may have and point you in the direction of resources.
Miche Palliative can sometimes be a scary word. we often associate it with preparing for death. But in fact it is designed to improve quality of life for those living with a serious illness - cancer or otherwise.
I found this definition and thought it may be helpful
WHO Definition of Palliative Care
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:
- provides relief from pain and other distressing symptoms;
- affirms life and regards dying as a normal process;
- intends neither to hasten or postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patients illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of illness;
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
I hope you both continue to reach out here to continue to connect with our members.
Posted by Miche on Jun 29, 2020 1:09 pm
Posted by Lianne_adminCCS on Jun 29, 2020 2:10 pm
Posted by QuarantineAndMe on Jun 29, 2020 6:07 pm
I would get so frustrated when people would tell me of "success" stories and how this person is now cancer free 2 years later after Stage 4 diagnosis. I wanted to yell at everyone saying if you don't have a survivor story that is at least 2 or 3 decades I don't want to hear it because 5-6 years even a decade isn't even long enough for me - - I'm only 41. I was just so angry and depressed.
But something is happening. I'm not so angry now and not always depressed. Part of it is treatment - - it's finally good to be doing something about the cancer. And I'm still working through it but when I first wake up I don't always think about how sick I am.
And I too am waiting for the day when this cancer becomes less of a focus of my day to day and I can just go on with the business of living.
I really wish you well on this journey. Cry, don't get out of bed, do everything you need to feel all those feelings. And then when you are ready you will move forward.
Posted by Miche on Jun 30, 2020 1:33 pm
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