The Covid19 disease and cancer

In this very moment many people are fighting for their lives while I am living in a calm corner of the pandemic world, for now. Just 33 people among a population of approximately 50 000 have tested positive, and all 33 are declared healthy and out of isolation. No one in my town have died yet. But we are all living in an experiment and we don`t now the outcome yet. Some diseases put you at risk and the Covid19 disease and cancer may be a serious combination.

Covid19 and cancer

Chemo therapy makes you more vulnerable for any infections. Even for common infections like a cold. These viruses have your body been fighting many times. During a chemo therapy your immune system would have problem fighting these viruses, because the number of leukocytes are very low. Chemo therapy is on the list of risks that may give you serious symptoms of Covid19. No one has met the corona virus causing the Covid19 disease before. So meeting this virus can be devastating even for people who don`t have any underlying diseases.
Radiotherapy is also on the list of treatments that may give you a serious Covid19 disease. Radiation stops the mitosis of the cancer cells or kill them, but it also paralyze the healthy cells for a short period of time. Since the corona virus is an airway virus I assume the doctors are talking about radiation to the chest, neck, face and so on when it comes to developing serious symptoms, because the air have to pass by these body parts down to the lungs. When the radiation paralyze the healthy cells your body may be invaded by the virus.
Information about Covid19 symptoms can you find on several web sites like https://www.mayoclinic.org/diseases-conditions/coronavirus/symptoms-causes/syc-20479963
I got some links for you about the Covid19 disease and cancer at the end of my post if you want to read more about it.

My radiotherapy

I have had radiation to the chest, because of my breast cancer. But I had to breathe in a specific way called coaching to minimize radiation to my lungs. To describe the method I will say it is like breathing in on command. Instead of lifting my stomach I had to lift the chest during respiration. I had to hold the breath until the radiotherapist told me to breath normally. But even though my radiotherapy is finished the radiation will keep on working for several weeks.
Radiation treatment
I see myself in the risk group, but my doctor disagree. I mean that since I have had cancer, my immune system must have been out of order. I also got an auto immune disease and have to take tablets for it everyday.  So I don`t trust my doctor and I will take no risks and rather stay safe. I have changed my lifestyle to support my immune system like no alcohol, more fruits and vegetables, more fish, at least 10 000 steps a day and enough sleep to mention some measurements.
Ulcerative colitis and colonoscopy controls

Cancer and anxiety

I have been living with anxiety since December 19 when I had my first mammography, and I just knew I had breast cancer. Do I have breast cancer? https://wp.me/pb4jAC-zN
The uncertainty and fear for life caused panic attacks, and I truly believed that I never would see my youngest son grow up. I even woke up at nights with panic attacks and found myself standing on the floor. I had written down most of what my oncologist had told me, but during my panic attacks I could not find any comfort in my writing. In the end I had to ask my doctor for a prescription on Oxazepam, at least to get some sleep. But I also found that the medicine also helped me to pull myself together and think rational.
Time went by and my radiation treatment is done My breast cancer treatment plan
I never thought I would reach the end of my seven weeks of radiation because of the pandemic. But I made it. I voluntarily isolated myself to prevent any diseases, because that would have put me in a 14 day of quarantine.

Corona and anxiety

When Corona invaded the world I forgot all about the cancer. My anxiety was now caused by this virus. The difference now is as I feel it, I am not “alone” in the world with this overwhelming feeling. These days I think everyone knows what anxiety feels like……….

Cancer rehabilitation and side effects

After my radio therapy I was supposed to take care of myself. I planned to have long walks, visit friends and my mother, relax in our cottage and train. But corona put an end to all of my plans.
I have to use half of my days to be a (non pedagogic) teacher for my son. It doesn’t help him very much when his so called teacher is struggling with side effects like fatigue and concentration issues. The cure for these side effects is to drink a lot of water, a walk outdoor and a hobby or an activity that gives you energy.

The lockdown

Since March 12. we were not aloud to travel out of the municipality to visit the cottage. This summer we can`t have our annually travel to Sweden, so we have to be tourists in our own country. But actually, I will miss it. The last few days in Umeå, Sweden A Campsite holiday in Sweden
I got mixed emotions when the schools in Norway are opening for my son this weeks. Some say children are less likely to become very ill of Covid19. Other children have died of the virus and some have developed the Kawasaki syndrome. So I don`t no what to believe or think anymore. I guess I will keep my son at home, because the Covid19 disease and cancer make me scared.

Hygiene and preventing Covid 19

For the future, at least until we got a vaccine, I guess I will continue to isolate myself, keep distance to other people and try to maintain good hand-, cough-, and sneeze hygiene. After I have been to the grocery store I also wipes of the packaging of the goods I have bought. You never know who and what other people have done to it.

Prevent Covid19
Preventing the Covid19 disease and cancer
3HandwashHandrub
Prevent the Covid19 disease and cancer

Useful links

You can read more about the Covid19 disease and cancer at https://www.esmo.org/guidelines/cancer-patient-management-during-the-covid-19-pandemic
https://www.cancerresearchuk.org/about-cancer/cancer-in-general/coronavirus-and-cancer
https://www.macmillan.org.uk/coronavirus/cancer-and-coronavirus
https://www.cancer.gov/contact/emergency-preparedness/coronavirus
https://kreftforeningen.no/ This page is for Norwegians.
Black to the Basics Crochet Tank Top Kit

“How Exercise Might Affect Immunity to Lower Cancer Risk” by Gretchen Reynolds https://t.co/qXcxoqGBq1 https://t.co/UAt1Ljl3mN

I read an article in The New York times which I recommend. You may have to sign up for their newsletter.

“How Exercise Might Affect Immunity to Lower Cancer Risk” by Gretchen Reynolds https://t.co/qXcxoqGBq1 pic.twitter.com/UAt1Ljl3mN — katewilliam (@katewilliam205) November 11, 2020 https://platform.twitter.com/widgets.js from Twitter https://twitter.com/katewilliam205 November 11, 2020 at 05:20AM

“How Exercise Might Affect Immunity to Lower Cancer Risk” by Gretchen Reynolds https://t.co/qXcxoqGBq1 https://t.co/UAt1Ljl3mN

 

Help me tell my Failed Suicide story by funding my book! – Please share

Recovering after my involuntary suicide attempt due to unknown Autistic Burnout “If you are at the bottom, everything overwhelms you because you are damn near dead. Everything should overwhelm you because you have no extra resources. Any more threat and you’re sunk so you become extremely sensitive to negative emotion and perhaps become impulsive.” In […]

Help me tell my Failed Suicide story by funding my book! – Please share

Guest Post – Dealing With the Mental Health bureaucracy

 

By Kathleen Mochnacki, Chairperson of the Board of Directors of Home on the Hill Supportive Housing. at Home on the Hill Supportive Housing.

I wrote an earlier blog about “Suggestions to improve the Family Caregiver Experience on Councils” https://mailchi.mp/d7c071fef63e/fundraiseront-mental-health-act-advocacyfrozen-odsp-rates-4859714 which came about from my experience as a Family Caregiver sitting on the Service Coordination Council on Mental Health and Addictions of the Central Ontario Local Health Integration Network (LHIN) between 2016 to 2019. I had replaced a colleague who was killed by his undertreated son with schizophrenia. Unfortunately, this tragedy and its implications were never discussed at the Council, even though I brought it up with the Co-lead CEO many times.

In that earlier blog, I wrote a rather sanitized version of my experience at the Service Coordination Council and attempted to put a positive spin on it, hoping that my message would reach the decision makers. But the reality of sitting on that Council was much more brutal. In fact at the last meeting on March 14/2019, the Co-lead from the LHIN did approach me and the other independent family caregiver and conceded that our experience “had been rough”.  And although I and the other family caregiver did attempt continually to bring our concerns to the Central LHIN and later the Patient Experience Department of St. Michael’s Hospital, I am writing this with the hope that it will inspire some entity of accountability so that a safer environment can be provided for family caregivers who are asked to give the family perspective on councils and committees. This is especially important now with the development of Ontario Health Teams. Here are some issues that need to be addressed:

Bullying and Intimidation

Twice I was summoned to the office of the CEO who co-facilitated the Council. I had no idea why I was called the first time but during the meeting, I was given a presentation (later presented at the next Council meeting) about how the work of the Council would lead to the development of recommendations. I felt that it was a little condescending. I had brought along a friend who was a retired school administrator and mother of a daughter with bipolar disorder, who finally out of frustration asked if the CEO had a loved one in her family with a serious mental illness. Her response was vague.

The second time I was summoned to discuss the ‘tone and tenor’ of the meetings as I had complained that it seemed that no one was listening. I refused to go. Somehow, I had been accused of a “conflict of interest” which is ironic considering that the Co-lead organization was charged with the responsibility of running the Council which included me and another family caregiver whose loved ones had received services from her organization. Was there not a conflict of interest in this situation? How comfortable were we family caregivers in bringing issues forth with this reality? At a later Council meeting, I was given a lecture by the Co-lead from the LHIN about how I needed to defer to the leaders and (I suppose) return to my token position of being a family representative. I and the other independent family caregiver then lost our transportation allowances. We had to fight to get them back. We were told “as a courtesy” that a re-imbursement was arranged for us, but in the future, we had to apply to be re-compensated.

Unequal access to putting items on the agenda

I had requested at some point that we come together as group and decide what needed to go on the agenda. This came about because the Council really had not come together as a group and I thought we needed to look at areas we had in common. This suggestion actually mirrored one of the recommendations of the excellent Interim Report which had been conducted by St. Michael’s Hospital. But as soon as I mentioned this, I was shot down by the Co-lead from the LHIN who said condescendingly that everyone was welcome to put items on the agenda. Personally, I would have liked to have discussed using a “family model of care” which appeared to work successfully with the grassroots organization, Home on the Hill, of which I was a member. 

In the family model of care, the whole family is the client because when one person has a serious mental illness the whole family is affected. This is particularly helpful if the ill person has “anosognosia” which is a symptom where the client is unaware that they have an illness and therefore will not recognize that he/she needs help. In such cases, the family does need support and information in order to support the ill relative. At Home on the Hill, the adult children of the families we support have been successfully engaged in a respectful manner and participate in our programs. As a result, their risk for re-hospitalization or homelessness has been lessened.

 One time, I asked for an item to be put on the agenda three weeks before the next meeting and was told that I needed to give them more time! When it came for the opportunity to have a family caregiver speak before the Council, the other family caregiver who had prepared her presentation and was about to speak, was suddenly interrupted. Her presentation was bumped for a ‘feel good’ movie about depression without explanation! On another occasion, we had arranged that another family caregiver give a presentation but then we were informed that her presentation had also been bumped for a speaker suggested by one of the CEO’s. We also noted that the consumer survivor agency at the Council appeared to have no trouble having their people present and it did not appear that they had to give much notice either.

Different perspectives of people with lived experience

Home on the Hill, which we represent, is a family driven volunteer initiative built to address the gaps in the mental health system such as supportive housing and appropriate support services. Our Robert Veltheer Lecture Series addresses one of the biggest gaps which is lack of information about serious mental illness. We attract well known psychiatrists and other mental health professionals to give lectures. We believe that the more knowledge there is about mental illness, the less stigma there is. We are concerned that the medical component of severe mental illnesses is not emphasized enough. We do not have enough psychiatrists or hospital beds so our loved ones can stay long enough to get well, and we do not have adequate supportive housing. 

The consumer survivor organization. who also had representation on the Council, operate from a different perspective and is funded by the Ministry of Health and Long Term Care. They state:

“We believe that people will and do recover from mental health extremes, and can lead fully self-determining and actualized lives with or despite mental health labels.” They “respect self-determination and autonomy without conditions” which could refer to life saving involuntary treatment. And they ask that we “expect recovery and wellness, and do not believe inherently on lifelong disability or illness”. 

I’m sure governments love to hear this as it means that they really do not have to recognize the severity of serious mental illness, as families experience it and, therefore, they do not need to pay for appropriate treatment and supports.

In contrast, the families of Home on the Hill know that people do not necessarily “recover” and our loved ones can end up in homeless shelters, streets or prison and we keep advocating for proper treatment and support service to prevent this from happening. We pay taxes yet many of our loved ones do not receive services, and we have had to build our own organization to meet the unmet needs.  Many of our loved ones are not able to speak for themselves because of the severity of their illness, leaving families to advocate for them.

This difference in perspectives needed to be fully addressed at the beginning because it caused unpleasantness. Even the leaders at the Council were confused as one of them asked towards the end of the three years, if we were “duplicating service”!

Anosognosia and the need for mental health literacy

The term “anosognosia’ means lack of insight which can cause the person to believe that they do not have an illness and therefore will not ask for help. The system insists that service be given on a voluntary basis, yet appear to have no concern for those that are unable to ask for help and become homeless. I had wanted to introduce the concept of using a family model to address this reality, where the family who is supporting the ill individual gets support and information. The resistance to accepting the reality of “anosognosia” resulted in a comical episode where the Co-lead from the LHIN stated that the College of Physicians and Surgeons of Ontario (CPSO), a regulatory body only, would have to determine that “anosognosia’ was a symptom of mental illness! 

This is not CPSO’s mandate and the leaders only had to look at the medical literature to learn that anosognosia does exist and that it has a negative effect on providing treatment to patients.

I also had used this term in conversation during one meeting, and as I was leaving, I overheard one of the CEO’s mentioning the term in a tone of “derision”. It was during the same meeting, that I had been given my lecture on deferring to the “leaders”. I felt so uncomfortable that I did not go to the next meeting. That particular CEO now holds a position of power in a local Ontario Health Team. This fact does not inspire confidence. In fact, one of the complaints of families is the lack of knowledge of serious mental illness that exists among many service providers.

The need for standards in how meetings are conducted

Many of us have attended meetings in various capacities in the past and are familiar with Roberts Rules of Order. Meetings at the Service Coordination Council were not conducted in this way. If minutes of past meetings were available, they were not voted upon and accepted by the Council. This lack of structure added to our unease and as one member said the “meetings were run in a shoddy manner’.

Ethical Issues.

The most egregious occurrence happened around the way the Interim Report on the functioning of the Council, written by St. Michael’s Hospital, was handled. The completed Report was dated August 2017, but for some inexplicable reason was presented to us at a September 20th meeting in the form of an edited power point. According to the minutes of that meeting, we were told that “the Interim Report was in draft mode and could not be shared at this time”!

It was a perplexing experience and I carefully checked to see if any of my input had been recognized. I had suggested having a psychiatrist sit on the Council and having more opportunities to hear the family voice. Hard copies of the Interim Report were not dispersed until the final meeting of the Service Coordination Council almost two years later on March 14/2019.

No Final Report was made available!

The question remains, why did we not review this Report and incorporate its valuable recommendations. After all, we taxpayers paid for it. It appeared that this valuable report had been buried for two years, never finalized and the recommendations were never implemented. If they had, our time as family caregivers would have been more worthwhile and perhaps services would have improved for the better.

Tomorrow, see just how governments actually develop a plan.

https://wp.me/pbe2qO-2pV

Ultimovacs cancer vaccine UV1

I found the other day an article  about cancer vaccine UV1 in Dagens Medisin ( “The Medicine of today”). The article shared some positive news when it comes to treatment of cancer.

The cancer vaccine UV1

In the article the Norwegian company Ultimovacs was presented. And this company has developed  a cancer vaccine called UV1. The positive thing is that this vaccine is meant to work to any type of cancer. I cross my fingers…..

Ultimovacs has made small synthetic fragments of some proteins called telomerase peptides. They are pretty much the same like the cells present in the tumour.  The tumour is now getting visible for the immune system. New T-cells are made which is very specific for the tumour itself. The T-cells in the Immune system will then recognise, attack and destroy the tumour.

Studies

The article presented a recent study with 20 patients with malignant melanoma. This study will also be presented at the major cancer conference ASCO in June. These patients received pembrolizumab in combination with the cancer vaccine. The goal with the combining is to achieve a better effect of the treatment.

Ultimovacs cancer vaccine UV1
I am cautiously optimistic

Counsellor Steinar Aamdal in Ultimovacs has over the years researched immunotherapy and malignant melanoma. “There has been an incredible development in the treatment of malignant melanoma. But we must remember that 40 to 50 percent benefit from the treatment and the rest don’t. That’s why we want to add a vaccine in addition.”

Exciting results

 In the study six of 20 patients are cancer-free on imaging which means complete remission. Six patients have more than 30 percent less tumours a so-called partial remission. That is a total objective response rate of 60 percent

This is a small study – how sure are you that the results hold?

It is not always easy to compare a large study with a small study.  Bjørheim emphasises that the company interprets the findings from the study as “a signal”.

 It was a unexpectedly high number of patients with complete response. Four other studies are ongoing with over 500 patients with different cancers like malignant melanoma, mesothelioma, ovarian cancer and head and neck cancer.

How soon will we have a vaccine?

It is a few years ahead in time before the vaccine is ready, says Bjørheim. Counsellor Aamdal is positive. “I am optimistic about getting a vaccine in combination with the current treatment. Not everyone has the effect of today’s treatment and we have to lift that curve.”

Good breast cancer news

https://wp.me/pb4jAC-Au

 

The Norwegian Constitution Day 2020/2021

I have written to much about breast cancer and diseases in general. But, it is hard not to touch the subject of the horrifying Covid19. We all know, I hope, what to do to prevent the disease. To prevent infection of Corona The Norwegian Constitution Day 2020 May 17 th was arranged without the school parades.
The Covid19 disease and cancer
https://wp.me/pb4jAC-Au

May 17 th 2020

Last time there were no parades were during the World war 2. So this is, as my son proclaimed it yesterday, the World war 3. In a way he is right. The whole world is fighting a virus. Yet , we dont got any weapons but hand wash, coughing and sneezing hygiene and physical distancing.The only comfort when I compare these wars, it is easier to seek shelter from a virus instead of the bombs. We can stay at home with our family while we are doing our hygienic measurements. But as I have seen in the News lately, some people don't care about the measurements, and they are protesting against the restrictions in their countries. I am very concerned. I am just saying "Stupid is what stupid does" and I just hope they wont become ill or loose someone dear….

Parades

Usually the parades are packed with happy children who are laughing, singing and cheering together with their associated schools, walking long distances to the music of a brass band. A Constitution day without a brass band is just unthinkable.
Because of the Corona restrictions the school parades 2020 were canceled. It is a restriction that makes sense, and we had to think on other alternatives. There has been different parades of Am-cars, police cars and parades of boats, ships and sailing yachts almost everywhere in Norway. Very practical when we got to have some physical distance to each other, but at the same time see our acquaintances or just other people.
The weather was on our side, at last. This winter has been long and hard. It was actually snowing May 15 th, but the sun was shining and warmed at least my frozen body. We decided to join the boat and sail yacht parade. My family got a sail boat which is actually my husband`s hobby. It is a 33 feet Contrast with all inclusive:)

The Norwegian Constitution Day 2020 is now in the history books. This has been the best Constitution Day ever my son said before he went to bed. These words meant a lot to us and they came as a totally surprise. Maybe my family at least has started a new tradition. Who knows, only 2021 will tell……

Constitution Day 2021

The Norwegian Constitution Day 2021 has approximately the same rules and recommendations as last year.This year the boat is ashore due to cleaning, polishing and so on, so I have to live on last year’s memories.

The Norwegian Constitution day 2020

Finally I am fully vaccinated or am I?

The Nyholm's Redoubt

Finally I am fully vaccinated or am I ? Time will show.

My first vaccine

My first jab was Astra Zeneca the February 24th. As side effects I had fever and muscle and joint pain. It felt like an ordinary flue. But the Norwegian government and the health authorities decided to leave the Astra Zeneca out of the vaccination program, because of some deaths they thought were caused by the AZ- vaccine. And it seems that they have found evidence for a connection.

Will there be any further AZ vaccination?

Finally am I fully vaccinated?

The day before yesterday I got the Pfizer vaccine, and the day after I had yet again more muscle and joint pain than usual. So much more than I can adress to the Letrozole. I had to have some paracetamol because no matter what position I placed my body in, I did not find any rest. I could not even sleep. But this is a common side effect of the vaccine. Everyone I know have all struggled with sleep deprivation.

After both of my vaccines there have been a big but….. After the AZ vaccine we struggled with the South African Corona variant in my town for several weeks. And the AZ vaccine has a poor effect on this variant. But I guess we are safer with this vaccine than not.

After my Pfizer vaccine the Indian variant is now threathening. It seems like a neverending story, so I expect we have to be vaccinated for years to come. Hopefully they make better and safer vaccines.

https://wp.me/pb4jAC-1xz

Finally my daily hike

Today I am feeling so much better, so I could finally have my daily hike I have become so addicted to. I was visiting the Nyholm’s Redoubt and I had it all myself. That is really rare.

Finally am I fully vaccinated?
All alone at the Nyholm’s Redoubt

The Nyholm's Redoubt canons

 

Will there be any further AZ vaccination?

I guess I am not the only one who wish to wake up from this pandemic nightmare. The topic in the media in Norway now a days is much about the Astra Zeneca vaccine. The question is will there be any further AZ vaccination in my country?
Will there be any further AZ vacciantion?

AZ side effects?

The winter has been hard in many ways. I have been struggling with fatigue since Christmas which has not become any better after I had my Astra Zeneca vaccine. In addition I experienced the same symptoms like an ordinary flue such as fever, muscel- and joint pain. But the fatigue has been more or less constant since February 24th.
Well, my problems with the vaccine could have been worse. People have been (maybe) dying of blood clots and the doctors  and experts suspect the vaccine has caused these deaths. The symptoms of blood clots and bleeding has apparently occured 3 to about 14 days after the vaccination. Some of these people were health workers mainly under 50 and healthy, as far as I know.

AZ efficacy?

The other problem with the AZ vaccine is the poor efficacy to the South African corona variant which has been dominant in my town. So I sit here and wondering whether it was a waste of time and vaccine. If I knew back then what I know now I would not have been taken this AZ vaccine. But luckily the health authorities in my town seem to have control with the spread of the infection with good help from the city residents.
I know that millions of people have been vaccinated with the AZ. The company which produce the Astra zeneca vaccine has announced that their vaccine is not the reason for the deaths with blood clots. How can they be so 100 % assure and how dare they say this?
If my health authorities refuse to use the AZ vaccine what would be next for us who already have had our first jab? A vaccine combination has not been tested as far as I know. Well, this is a pandemic experiment but I am not a vaccine opponent and truly believe this is our way out of the pandemic. I have not heard about same severe side effects when the media write about Pfizer. Anyway, will there be any further AZ vaccination in Norway or will we be offered another vaccine? We just have to wait and see……
Covid-19 Vaccines: ‘Frequently Asked Questions Answered’
I've Been Vaccinated Wristband