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Never had Radiation ñor IV hospital Chemo .But on oral AI TP
elle29
595 Posts

I never introduced my self bc it changed in diagnosis just dealing with that in a new province that does not have Universal Health Care Coverage for everyone regardless of income . That was the safety net in that province and fought for then to start accepted by some provinces long ago by Thommy Douglas a Canadian historically to bring public health care coverage to all .
And supplements certain treatments there . Which I do not get here would help my recovery I feel in certain meds used otdered by medical staff and in boosting neutriphils ,to avoid an infection risk ! . And , as other side effects from treatment .

So here I am with càncer 2020 thick in the Pandèmic effects made accessing health care consult for diabetes pre surgery almost negligent with excuses by 3 employees one the doctor . Who said he had too many patients . Excusez moi , what am I ?
Such that the surgeon had to intervene and advocate on my behalf telling another specialist . “ That is not the way we do things . “ It’s surgery as usual which has been ✋ stopped again due the Covid Varriance still 2021 ! Hoping all those without vaccines get it bc they are taking away funds needed for health care in other areas like Cancer

# cure4Mets or your grandparents home care or child with cystic fibrosis needs to live ! To have an opinion to share . Honestly this is a province that protests 🪧 carry or reimagines another way . Well darn it we too need this so contact your MP and MPP ! Has anyone heard of one offer to address #cure4Mets look at the last 5 years link & on advanced cancer . Has there been any change prior that date for Mets ?
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My IDC from that biopsy to post surgery . Had become MBC 2021 in the Jan . New Year from several scans done the previous. 4 mths of 2020 . Ten vamevChristmas and I needed a break from cancer .
After a phone appointment call I was assessed prognosed & reported by a letter to my own GP / FP by my Primary Medical Oncologist , from a larger city regional Càncer Agency Centre .Everything was well planned in protocol too . I still wonder about not being permitted to ask question about treatment from the Radiation Oncologist I shared with easily but never did the treatment . Because they discovered 2 hot spots from CT / PET glucose nuclear scan . Espeacially that one a lymph . We all have between the artery and heart , found in my body with cancer . That was too difficult location to biopsy Respirologist stated after being told I would need it for a biopsy in the lung 🫁 .
Others may consult a Thoractic Sprcialist , how grave they are or suffering pain and symptoms .
Some Prefer to get up earlier I…try coming to live here that melatonin dark grey rainy days rob ours and our Vit D too living here can last a month to 2 weeks . Then spring also starts in Feb. here as the South Island area .
Now though another change : With substitutes Onco physicians , also a GPO , now in both Clinics for Càncer care, Spring Summer 21 it’s like I had to teach them .? Lol ! This CCS and CC has been invaluable resource. And reliable to source or research also chatting sharing with others there online being secure . .
Now approaching fall just did a 2nd lab test in the same month for low wbc Neutrophils and the GPO found Macrocytosis. . To see if the Levels improved ? Which caused long sleepy days naps , tiredness.Ie Sometimes u just do not last as long as u did before getting things done . Ie Your schedule changes to when u can do things Ie I was going to do a late nite walk to the mail box maybe will still 9:38 pm a quiet time of school back routine for families . In a gorgeous fall warm or hot day take my dog in a missed walk . I truely want to do , finding it still hard even before the cancer . With much to do . There are only so many meds I can take for pain to function always taking the over the counter first , and to see if that works ? I had a exercise PT plan for pain relief b4 the cancer of IMF .
Oh well Decided for hopefully morning . Nice thing about retirement u decided your own timing which can be tomorrow or the next day or even in a week . And with this treatment being oral your not on a hospital schedule and staffing . But Told I can cal, the Cancer Agency nurse .
I am working out the kinks assigned , in a less rushed GPO who definitely is not harsh just came aboard in how he talks saying “We “ him and moi will work together in this oncology component . I never asked his background . Even addressing other health matters I ask him to interpret my hemoglobin profile results or new persistant side effects like Cold Uticaria red skin reaction to any cold . I believe in my research had to do with the lymph nodes . As Macrocytosis , enlarged red blood cells has to do with Leukemia and / stomach cancer .
Only bc my knee pain lessened and settled today from extreme pain I felt I could go longer in my activity . Now just but still aching throbbing .I wonder was this from the Covid Vax ? But find with fatigue that answers my length of activity for the day . Eating a nutrious meal gives a little boost as I am also diabetic .And low cell count I noticed lowers my apetite , voracious usually on the 7 day OFF treatment bc of toxicity but mostly low blood cells counts to replenish on their own .

….But ponder this in a response from my knowledge , being sent a letter that another thing has been cut away in càncer care here . Besides not offered costly meds other prov have health coverage .Would help pple in Ambulatory treatment to have the same meds from loss of cell levels used from the bone marrow .
The Telehealth Satellite we use for appointments with Oncologists. Has been discontinued through out the Island ! I Don’t have much , already in care as an Ambulatory Patient, swallowing my patience today again . And blood tech lad telling me their industry problems of not enough staff , That 20 left over summer ‼️

This is my struggle here , that was smooth intially with my Medical Oncologist in the picture or behind the scenes in Leadership,as my physician . Who himself , was a prof at UBC . Who he had been chairing boards Ie Morbidity , as my Primary Oncologist long before I knew or met him .Now away until 2022 wonder what his frustration has been ? COVID measures or Oncology lack of stage 4 development must be beyond 30 years ?

This reminded me of my mother currently living who had equality with others in hospital , courts and other locations she often frequented in her work and being blind . To ask as a professional from other professionals dialogs , sharing . Some questions from them of their own care she would ask of them . And also socialized with in her home . Some I got to meet from not paying much attention she said we’re Judges to doctors to Embassadors , fathers of scientífic stem Research of country men , and lawyers to dance with that generation did . Invited over dinner my parents enjoyed their company and prepared . With or good coffee she always , even served up .She was well known but also had her disagreements of opinion . Often I just listened if there over coffee . At that time I cannot recall if I had cancer . But one hospital in particular she did not care for their professional opinion with people she worked with , encountered in her elder age even . And asked to investigate allegations of abuse . Some of us in the right people of the right time gleen from these mentors of others we come across . Often I read her University book nursing my babe . You never know what life has prepared you for . We have become so comfortable knowing each other here we can relax in what we hear or speak and share more then Cancer . Or even stroke each other when low on the Ferris wheel or roller coaster of emotions overwhelmed when first diagnosed with cancer being unbelievable and still surreal .
You do have choice still in some cancers, to ether delay and take trip away preferably the same country or a few weeks to starting treatment recommended . Or finishing up employment matters with HR with support here on CCS . To take a break to be home .

Now years later having left one cancer diagnosis of adénocarcinoma behind. After 4 years follow up at PM /TO University Hospital Network as good relationship of multiple disciplines needed medically for cancer patients . I asked if I could leave the follow up , to move across the country , nearer to my younger family . Some even go to the states for treatment .
Which I did while post whiplash , settling here in my own interests to develop .Being after caring to be with my parents need widowed & blind . Arriving here for several years with chronic pain unable to sleep bc of the pain , from what I believed to be from a car injury . At that time here unaware if any cancer being there . Another member here insisted her Onco look into .
Inwas in an Ambulatory Pain , Whole Program of therapy , pool , eduction for a large group of us and ongoing clinics over 12 weeks with professionals in Pharmacy , Dieticians, specialist doctors etc . The only program of its kind pple came from the mainland and other cities . In the end of this 12 weeks there was a lumbar injection done for pain if we qualified . I have 2 nodes there of lumps beside my lower spine that can be felt even seen , the doctors said are from arthritis . Any injury I get I notice be comes arthritic weakened and malformed twisted in an abnormal appearance like my finger injury . Often we take anti inflammatory over counter meds think nothing of it and carry on . Unless your a sports athlete ?
Resulted in getting 2 MRIs revealing back deterioration and 3 spinal problems for which only PT and Pilates helped me function over several years . I think cancer patients had something similar with workshops in medications used for treatment even
Feb March during following the media blitz from epidemic to pandemic of Covid That shut down the global world to attack this deadly virus 🦠 together and understand this being directed daily what we were to do . Basically keep distant and lockdown indoors bc of the unknown factors of spread . I had a painful lump in my left breast that grew rapidly then but no one was allowed to see there private MD then during constant changing measures directed regarding the spread of theis virus being studied and watched in pple who caught the deadly disease 🦠 for which there was NO CURE .
Post partial lumpectomy I was given requisitions to get several nuclear scans by the oncology team . Told another diagnosis that is fatal . One with no cure either . Even though my Primary Onco was tender , kind , empathetic and but factual and finally getting a treatment plan . I always felt like I was being carried , lifted up in care even though I did not see him after one visit and appointments with his exceptional listening skills . Next we talked twice by Telehealth at the hospital where I lived .
Soon after as I got trànsferred or referred over to my local Satellite 📡 Càncer Clínic . It’s béen like this … I feel like totally ignored in lack of care or comfort he said should be expecting .
Today again I was walking around , gosh do I need to wear a big sandwich board here : “I have Metastases Cancer stage 4 and there is no cure ‼️⁉️ “

I notice this anxiety nervousness tends to happen , when I have to do anything like blood labs , prior to an appointment with Onco , CT exam or out the routine . And correcting the substitute doctors , in how it works in my TP except the Onco sometimes. Ha ha ! I feel I have to take the lead and get through this appointment more and more to be insome control of this monster cancer aNed with the doctors . Oncologists do not want to hear little details not about the cancer . Like side effects or symptoms , to deal with your other doctors .
It’s like those in employment , put u to work in the basement in some dingy corner being slow or a nerd . Insignificant , as we use to hear or bé made or termed lamelles and as a member was here . .I t has to primarily about the cancer remaining in you or found to be spread .
Or only 2-3 dècades ago ….In hospital location they’d put those cancer patients in a room never to be visited, but to treat by a charge nurse . And to just die alone & let it deteriorate them rotting away .
Like they did for pandèmic Ie Elderly & young with Covid left alone to die some for 3 -4 mths . Left in a room , hallway or Freezer Truck full horrific and cruel Fact or Even political for leverage to state a Point so unethical … . Not be seen by family . You think about that is the real fear . A brother said of his sister DIE ing at home quickly in Italy and no one to pick up the body . All those infrastructures gone in an instant ! Doctors dieing at an pheniminal rate in Itally bc social distancing was not believe d nor implemented . Or in China left on the Street dead shown on media. Then a documentary was made in the truth…
I try not to think about that , if I did not have to explain to those in the medical fields like the blood lab tech and to say out loud . I am here for a blood lab for cancer . Or explain in detail for testing my cells please take me , please it has to happen not being an exact science dependent on when they run low for moi and already . I am tired to get here , making my self .
Like those here as member have to go get up every time to Drive them selves to Radiation or treatment . I have been an Ambulatory Càncer Patient unlike those in trestment in hospital for Chemo or Radiation , some us are alone doing this . My family offered to help in their way . But now back to work post covid changes and measure making new temporary normals in business and humanities , to function and with famílies like their own . Like u know challeged exceptionally , advocating for them more and @Whitelillies . And I did in work education … But all my life for my mother who got past that accomplishing her degrees , business and crèdentials , to support others . Or those here with càncer treatment or METs going back to work somehow with added health symptoms or side effects worrisome . To live as normal as possible I told my family to do .
And they the lab tech taking my blood ,today who hemmed & hawed they have to work more , longer and about one to give birth in 2 months . They are so short staffed she said down to 2,3 sataff @JustJan .
When who they have a shortage bc 20 left their employment this summer .

It was good . Rather then use the clients made as an example of except my pleading .
Caught between underpaid, in politics that unions should take care of if so .
I am trying to survive if I have to kick and scream, I ‘d rather not do ! Nor want to plea . Nor wish to be a political pawn . I have lived long to know , about how polítics and medicine make poor bedfellows with patients left in the hall or emerge for 6 + hours into midnight to bé seen . That was moi to get medical care with càncer symptoms and pain going to Emerge ONCE by Ambulance I have to pay for held up for 50 min . I was put n a hallway from triage and kept overnight in a coed discharge room ! .
That was during my pain period having fallen twice in 2 months & initially felt fine but later worsened havin to go to . And while monthly going to the blood lab . This month again Told not to continue my meds twice bc of low counts of Neutrophils . Nor will they will not give me the meds to boost me up other on Chemo get,while my in Neutrophils at risk 0.6 even close to red flag level of 0.5 . Even a vit B injection was not offered . What is going on I think ? . Now with Cancer being treated , others were told many other meds to take in Chemo not offered and with held from moi ? ! I question this ever time . I speak to the doctors . And will ask “ Why does Mets / Advanced Cancer stage 4 have no cure ? “

It seems like the end of the road for those of us . I am hoping to be NED . Others are hoping new treatments will be developed holding on , as we are all in palliative care not being treated further taking risks either way or more surgeries . Some doctors specialist ad Oncos refuse to treat a patient any further . So the common thread is to fight to live trying the next drug available in chemo or more radiation 💪🏻 keeping strong to get through what is available , toxic to some . Elle 29
Oh forgive my typos ! ,

1 Replies
supersu
433 Posts

@elle29

wow elle!
can't believe you have never introduced yourself formally….thanks for this comprehensive post of your story thus far!
(just a thought, have you accessed the blog section of this community? it would be a great place for you to park your posts and chronicle your story.). how lucky are we that this virtual community exists??

I feel as tho I do already know you; since you and I came to these forums about the same time, me thinks!
anyhoo - hello and welcome to this community. it is so great to have information and ideas from all kinds of folks, in all the areas of this country….your posts no doubt help others.

I hear frustration and anger as well as hope & happiness in this post.
cancer during COVID certainly makes us experience the wide range of emotions as you document. who knew in 2020 that COVID would still be an issue for treatments?

being a health care worker now in Canada is tricky business. I was horrified to see protesters in front of the very buildings where these providers work miracles each and every day. how absolutely disheartening for staff to have to confront that kind of anger!! it is a crazy world.

I am sending all my virtual good vibes and hugs. it sounds like you have some good people on your medical team. keep well, do what you can - when you can. enjoy your beautiful surroundings and family.

cheers/hugs
su

#breastcancer #covidcancer #emojiqueen

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