+ Reply
Log in or Register to participate in these discussions
I am tired of being a Ping Pong ball 🏓😩 Come over to groups , fun , laughter , sharing anecdotes lightheartedly
elle29
166 Posts
It’s hard to flip the dialogue that flopped on you ! Let’s keep others here warned or covered , even watching their back as a good friend would do ! Your wisdom , or experience in even common sense with lightheartedness may just be what they need 🐕‍🦺 .
z"ZzQ : Even your feedback xxs% There are members from 2011 I wonder if they are alive ? I have not gotten but asking CCS for peer supports by phone or group that do not exist anymore . At least not in person bc of Covid measures . Some do not have Zoom 🏎 or any more patience left just dealing with making it to prepare for surgery or diagnostics with other conditions worried or even employment obligations or family or nothing in supports by real live person .Some travelled 1200 miles to get cancer care , radiati9n and then some more miles . A women here drives to California for treatment .
Exhausting all suggestions to push forward with out repercussions or fear.I was referred to call a crisis line of volunteer young adults . For what is normal for some cancer patients to be in shock or panic attacks living in this constant fear with cancer and in Covid , told the Cancer Centre would respond . When I get an attitude I believe well your advanced cancer why bother ! So u push on to get the answers somehow and a silent response or apology is given . What good are percentages then and years left given to live in an estimate *”'%%% And told by the specialists office immediately defensively . “What do you want us to do , what can we do ?” Huh ? 🤪 I even offered a positive solution instead of negative prognosis , being ‘ A Survival, Plan ! ‘For Gods sake how do you sort through this confusion and muck ? 🧸
.🎊........Left hanging , it appears what was once offered does not exist from Covid that changed it all with no solutions either in the near future for those with Mets Stage 4 . Other people get back to working essential jobs ! Don’t get me wrong I am so grateful for an Oncologist and A Treatment Plan .
.........We get enough of , the some getting the minimalist , to being indifferent, but left with the problem
to cancer patients . Being spoken to so seriously insensitive ,usual redundant , with standard pat responses of the last 10 + years or medical gibberish .
🧮 Q: Just exactly “What is this mysterious mathematical , formulae process our specialists do.?..'. In giving their assessments of finality ?” Do they follow a chart or input our criteria age + diagnositics+General health or private health benefits wealth into a computer program to do algorithms to give diagnosis , treatment and prognosis..It’s all estimates physician make sure seems like a gambling game of numbers the patient is left with wherever the ball bounces on the Roulette table or Slots 🎰 . ? ?
🐲 It’s not the same luxury others before us had , with Chemo meds workshops , education and supportive services, private coverage or private health wealth benefits ! I did not even get the Oncogene done told it should of been the beginning . Nor biophosphates when asking now for it .
They, the Ministers of Health , are leaving the medical quessing of timelines or their delivery needs in their departments , and with insufficient supply of vaccines is TRUE ! Some medical staff on front lines are passing on their chance for the vaccine to allow others in the LTC staffing to have what remains . And in this discovering of what to do of the Covid pandemics formulates , with charts , graphs as a Dr Brown here said , are figuring it , as they go along with us of the waves of fluctuations in Variants now .
.....🐳.Partly true our province is giving vaccines to all who are in the LTCs , then next the front lines , surgical and then the Medical twice until March . Immune Compromised as cancer Mets folks are not until June here .🦦
🛩 Even International travellers are allowed now to come into our province , tested twice , and get a govt room to wait in before travelling on .✈️
And some of us especially being left with cancer post surgery not attended to I had a whole medical team from South Africa. 🦍 And if your a patients and find if u have medical breathing problems being a weekend too I was told with no walk in clinics open , told they are unavailable like the doctor , nurse at the cancer clinic again said . Or left with fear , being the driving force and during Covid of more outbreaks of spread !🦧
.....What is the new normal , ...is what you are to push and make to change .Stuck left high or low on the Ferris Wheel 🎡 To figure it out yourself or somehow deflect attitudes even from people associated . And who do not want to hear from you , even some medical employees in Cancer Centres or Clinics , who say , “why bother it won’t do you any good .” What?! 🦩
Are we to go to Emergency and expose ourselves more t9 Covid variance now as those in medical ?
If I was not immune compromised with 2 conditions , I would go offer my help in the hospital or testing Covid 🦠 or even the blood labs 🧫 🧪.
Are we suppose to be An Ostrich🙈 and stick our head in the sand left to die bc you have Mets cancer anyways ! ? 🕊 Elle 29
3 Replies

Hello elle29

We read your recent posts on CancerConnection and wanted to reach out.

We are sorry to hear that the support groups our Helpline team recommended are not currently running due to COVID. These are such difficult times with social distancing measures and stay home restrictions for groups to run. It is difficult to learn new technology like Zoom when you are dealing with stress and already feeling overwhelmed. You have done well getting to know CancerConnection which is probably more difficult to navigate than attending a Zoom support meeting. Often times you register and receive a link in your e-mail to click at the time of the meeting. That peer connection and talking is so important and can still be achieved virtually even though it is not the preferred method.

Feeling like you're left hanging is a difficult place to be. May we ask what is your current plan for treatment? What are the next steps?

You mentioned prognosis in your post and how it is estimated. A prognosis is the doctor’s best estimate of how cancer will affect someone and how it will respond to treatment. Prognosis and survival depend on many factors. Only a doctor familiar with your medical history, the type, stage and characteristics of your cancer, the treatments chosen and the response to treatment can put all of this information together with survival statistics to arrive at a prognosis. A prognostic factor is an aspect of the cancer or a characteristic of the person that the doctor will consider when making a prognosis. A predictive factor influences how a cancer will respond to a certain treatment. Prognostic and predictive factors are often discussed together. They both play a part in deciding on a treatment plan and a prognosis. Doctors use different prognostic and predictive factors for newly diagnosed and recurrent breast cancers.

Is there someone in your life that can support you with your appointments, even if by phone?

There are many treatment protocols available for Metastatic cancer today. In some cases treatments that were available to you before the mets were discovered may no longer be an option. I know on another post we talked a bit about palliative care and the benefits to the person. Palliative care is a type of care that provides physical, emotional, social and spiritual support for people with cancer and their families. Many people have doubts or fears about palliative care because they don’t understand what it is and then fear what they think it means. People often think of palliative care as care that is limited to the last few days or weeks of life – but that is only a small but important part of palliative care. You may even think that if you have palliative care, death comes faster – but in fact, research shows that palliative care can help people live longer.

You may want to connect with the Patient and Family support at BC Cancer. They are counseling professionals that deal with cancer patients and their families so have a real understanding of the unique challenges that cancer patients face with a diagnosis, treatment and the emotions that go along with that. The Victoria center can be reached at 1-800-670-3322 or 1-250-519-5525. The link to that page is here: http://www.bccancer.bc.ca/our-services/services/supportive-care/patient-family-counselling. BC Cancer also has many other programs available like nutrition, pain and symptom management and art therapy. Have a look on the right side of the link we have provided. Either you can connect on your own or a counselor can connect you with other resources.

We are glad that you found our community and want to help you get the most out of the support available here. Have you considered starting a blog where you can express yourself and get things off your mind? Click the word blog that I have hyperlinked to get started. The forums and groups are a great place to ask questions and connect with others going through something similar. Sometimes in online communities your questions can get lost in a long 'blog style' post. We would suggest posting in forums like Breast Cancer, Advanced Cancer, Treatment and Side Effects and putting the question you have in the subject line of your post. Then focusing your writing on the question you have. This will allow people who have suggestions for your question to reply and help. You can also reach out for support and check in with us in the forums and blogs space as well. We hope these tips help you to get the most out of our online community and the type of support we can offer.

You're going through so much right now, we hope you will also reach out to the professional support resources we provided above to get the additional support you need. If you have any questions about how to best navigate the site don't hesitate to ask.

We are here for you,
Lacey and Lianne

elle29
166 Posts
Thank u Lacey & Lianne for your time to respond . I do not understand .Are u saying U have a Zoom group?
That u r meeting when forum or discussions are being posted ? Cancer Connection is my place to find a place to research and connect from IDC that turned into MBC in 3.5 months. & be heard now ,or hear others with some similarities I had little or no time ? But then at night burning the candle both ends Lol I did chuckle and I did on FB have regular short contact with someone in the UK . Who was a blast daily encouraging her during radiation . .Understanding this more as I go along , compassion , light hearted distraction and prayer to others in this .🧘

From what I read nothing is final and a TP can change as a 'word use ' as ' prognosis .' Manitoba used a positive approach called Survival Plan . Even my Onco agreed that they no longer use the word 'terminal ,' I am trying to turn the negative approach around being proactive to something positive into Survival , And others here on CC have found their prognosis given, has been longer and going past even to birth a baby . continue life forward supercediing the time limit told them , I myself am proof before with adenocarcinoma .

I will try answer again in a shortened version as I now get worse anxiety & panic attacks to go over this here or with anyone . And to adapt to getting strong 💪 .Took a break pre & post Christmas as my diagnostic PET /CT was Dec end . From that Jan 21 , I have be given an oral treatment of 3 anti cancer meds for what is "likely "MBC by My Oncologist who tenderly & gently spoke his assessment . I got a copy of the letter of details with mention of 2 spots on lungs not clear about translating medical terminology to do Hmrk .still .
So I asked the GPO but still am not clear . Would need a drawing .
However it was maybe good that there was no written prognosis that was on the Onco Vic. report & it was missing. When he spoke by phone appt he said then a few years prognosis . Kindly he empathized when I said I was sad to hear that.😇🦅
This all different here from ON now to understand for me , to move here and retiring recently here in plans .But he made it easy to comprehend and by his manner or nuances professionally compared to radiation and chemotherapy . But I sort of felt caught between the 2 Oncologists grateful though to have the 2 jusrolling with this a nurse from there called & asked to send a advanced planning I had filed misplaced? I had no idea what the Gen. Surgeon meant by a Cancer Agency when he spoke prior to surgery and IDC diagnosis .although both times family was with me.
🤺
Then my Oncologist told me the TP for 3 mnths to be seen by his colleagues here at my Hosp by t GPO and then we would talk by video conference at my local hosp. after the CT for chest & abdomen was in for the results. And Re, the lung spots if being shrunk smaller ❓.I asked him about if this was palliative which he said a definite NO. And asked him if this did not work then what . He said Chemo ...
.....Meanwhile I am to see our Hosp Cancer Clinic GPOs for my TP medication how I am doing , blood tests , meet with their pharmacy , and with nurses of both hospitals supports available . . I had already been in touch with Counsellors long before bc in post biopsy . As I have a distanced elder parent matters 1500 miles away with crisis distress to manage also agreed with my family here who work to make arrangements ❗️ . Now with cancer myself I have asked family to not share or burden my own mum with 👌
🙀
So meeting the GPO the first time proceeded to tell me the diagnosis , and prognosis adding Radiation too that differed to the Onco , that my own GP said put me in shock ! O I did not need to hear again 👎❗️When calling my Onco office twice to clarify this .Who asked me what could be done as they read the GPO report saying differently to what I heard I refuted . So I wondered if this GPO was connected as one of colleague with the young colleague a Radiation /Oncologist at the Vic. Cancer Centre. After the results came in from most all scans , blood labs from which I never had a chance to know who was doing what ? Although but chat with u as others & research on CCS .

Happier positive hopeful when my Medical Onco had done spent time with me ; It was all the Medical Oncologists , his office from the beginning she the Rad:/ Onco said last fall . And who had called to have ordered the all diagnostic tests except the final PET/:CT . Her and I often just stayed in touch too and grateful thanking the both Oncos at Vic there online ,as by phone .
I am in my 2nd cycle of Oral TP meds . Tomorrow I gofor MAmm:/Ultra. on right breast not done . But requested of my own GP andbe ordered .And required with LDH and Bone Density off cycle base line needed. And then a Blood Lab Sat as part of the TP to check WBC bone marrow ,
..... I think I will take a breather Break this Oral TP gives mr now until April while I can to NOT get overwhelmed by 'likely MBC cancer ' . Not sure why you refer me to Familiy Counselling❓Although I do have a Cancer Counsellor social worker from my local cancer clinic but as I said they often say from both cancer hosp. locations their availability is strained .But family drives me when needed, So far my home house 🏡 structure has held out stable. And my dog companion not venturing away from my home with diabetes too,
I understand 💜 heartfelt from here on CCS / CC many women ha unstabl or more than one primary cancers overwhelming to survive those surgeries and/or some sickening neg.reactive chemos with radiation to get past to heal for more being done taking time for their own symptoms too, being so courageous❗️❗️💪👍Have wonderful nurses at their cancer hospitals or at home ?
Just one stepping stone at a time for our paths and pandemic measures I read that some on chemo cannot get the vaccine conflicting crossing those bridges . And I do have follow up on meds I have with my own GP too here I just spoke to yesterday to get something for panic attacks.being cautious as my own GP said not to mix my meds existing with muscle relaxant.There r no seasons for cancers patients but get past this to recovery or try to enjoy something the worst being left alone as most feel though working or social friends once who fall the wayside . My hope is a to enjoy a retreat or something daily or laughter be active more off line . Strengthen each other as we try to ourselves . Most posts here are short I like to keep mine too.As long ones get messed & hard to edit .It would be nice to make a friend or 2 and laugh . The MSW encouraged O reach out too but u feel either more insular with cancer or reluctant to receive any darts and arrows flung your way . Keeping to those here or related who understand or private more.
As before I will be popping in & out here on CCS /CC however time is needed for myself feeling blessed grateful while on this oral TP .Which all of this could change to better or worse or in between ,hopefully miraculous healing many here to celebrate each stepping stone & remembering those who did not make it to take care be kind to yourselves as I have been told also for myself Eh❓Sending prayers and meditations . 🙏Elle 29
elle29
166 Posts
"You are not the cancer " 🦦 Share ;lighthearted prayers , meditations and yoga stretches etc
+ Reply