Game Changers Living with Advanced Breast Cancer
Hi, my name is Karen, I am 61 years old, married and mother of 2 adult boys and have lived with HER2 Advanced Breast Cancer for 13 years. As we are acknowledging people with Advanced Breast Cancer on the 13th of this month, I thought I'd put down some thoughts.
Here under are my musings with regards to events during my journey that have had a profound effect on my emotional being and the way I live. I hope what I have said resonates with some of you living with Advanced Breast Cancer. Sometimes we find it hard to express our game changes and I hope you find what I have written interesting.
1. Being diagnosed in 2007 with Metastatic bone disease - mortality really kicks in!
I’d thought I was going to die in a matter of months. I asked my doctors what my life expectancy would be. Based on the average, I was told 4 years and I already had one! My life was now in a holding pattern as I was dictated by a new entity “cancer”.
Despite this news, I was determined to keep life as normal as possible for self preservation and the well being of my two young adult boys and husband and bills had to be paid. I worked for 6 years living with cancer. There were periods during those years when I had to draw on my annual leave, sick leave and long service leave due to surgery, radiotherapy and regular chemotherapy. Despite my chronic illness, I was nonetheless still able execute my position well, and those not aware of my personal health challenge were none the wiser. However, in the end, it did become too hard to work full time as years of chemotherapy and the disease not being stable had debilitated my body and energy.
There were many times when I had to rise above my limitations and living with permanent fatigue made me irritable which I vented at home. I was not always nice to be around.
On a positive side, my disease has made me take nothing for granted and I have become more tolerant of people and much less judgmental. I now stop and smell the roses and give time to myself. I have a deeper connection with my family and friends that I hold dearly in my heart and feel blessed to have them.
2. Giving up work.
I gave up work prematurely because my employer agreed for me to go part-time but this did not materialise, forcing me to take my Income Insurance. At that time I advised my company in writing I was taking unpaid sick leave and believed this to be so as I was not told otherwise. I kept in contact with my immediate boss however when I paid a visit to Human Resources some 21 months after I left work to discuss my return, I was told I had been struck off the books. The explanation given was “company policy”. This was not a proper explanation, nor grounds for dismissal. No-one bothered to advise me that my services were no longer required and I had not resigned. Due to my employer’s actions, despite being a skilled person, competent in business and marketing, my continuity in the workforce had been broken. Given my age and illness, finding new employment has proved problematic.
This was extremely upsetting to me. I worked in this organisation for 22 years. I had a career which I identified as a big part of me. To have this taken away was mortifying and has taken me a long time to accept that I am no longer in the workforce.
Through my own experience and talking to fellow cancer survivors, I am aware problems are not uncommon where people with cancer are encouraged to leave their jobs, or having their terms and conditions altered, to their detriment, upon their return. In my case I got lip service and was dismissed surreptitiously.
Currently cancer is considered to be a disability under anti-discrimination laws, which means that reasonable adjustments are made so people living with cancer are not disadvantaged at work. I don’t believe this is understood by employers.
3. Cashing in my superannuation
As I was no longer working and had terminal cancer, I cashed in my superannuation because as a family we had to reduce our household debt in order to live off one wage, pay medical and other bills. When I cashed in I was diagnosed with metastatic brain disease and indications were that I only had months to live. Now I have lived on for another 5 years. What this means, my husband and I no longer have a retirement plan and will have to rely on pensions that has already started with me being on a disability pension. I was the main income earner so our standard of living has dropped and keeps doing so whilst I keep living. Living with cancer brings everything forward making it much harder to make ends meet whilst living and coping with a disease and its associated costs.
To access my income insurance then my superannuation, entailed extensive paperwork that had to be completed by my oncologist, GP and myself. As I have terminal cancer, my applications were accepted but the process was arduous and I can understand it being overwhelming for some. To add salt to the wound, in the early days of receiving my income insurance, I had to chase the insurance company every month with monthly telephone interviews regarding my health. Not nice when you have an incurable disease and are asked to justify why you qualify to get your next payment!
4. Being diagnosed with metastatic brain disease.
I was terrified that I was going to die very soon. I couldn’t believe it, I had no symptoms. The lesions were picked on my regular scans. My mortality was very much front of mind and I was deeply concerned how this diagnosis was going to affect my quality of life and how quickly I would deteriorate. I had three tumours in my brain as well as one in my spinal cord. The one in the spinal cord was troublesome as I already had extensive radiotherapy on my neck due to bone mets and it was touch and go if they would give me another dose to treat this new threat which could render me a quadriplegic. Very dark times. Radiotherapy eradicated this threat and has disappeared (a miracle).
5. Acceptance that cancer is a part of me.
Cancer is my reality which I now embrace as part of me and consequently I try to make the most of every day and moment. It has taken a long time to accept that Cancer is part of my body. When I was first diagnosed, it was a foreign entity that had to be conquered.
Sure, I am now experiencing some long term problems such as nerve damage in the form of neuropathy in feet and hands which affects my mobility due to the disease and years of chemotherapy, radiotherapy and surgery has affected my balance, but for the most part, I take it in my stride. My normal is changing because of my physical limitations but I have a good quality of life.
I am living with advanced Breast Cancer, however incurable does not mean untreatable. 5 years ago treatment options were drying up until Kadcyla became available. I have had 70 doses and I am still here! New technology brings hope.
6. Going on a disability pension.
I am now on a disability pension, which doesn’t sit easy with me. I have always been independent, I have exhausted my own personal avenues for income to pay the bills, and a pension was my last option.
Once I went on the pension and my health improved I sought part-time work through employment agencies that place people on a Disability Support Pension. I soon discovered that although the government pigeon hole people living well with cancer as Disability Pensioners, they are discriminated against because overtly they appear normal. In my case I am skilled and articulate and found they are either not set up or aren’t interested in people like myself. Naively I thought this avenue of employment would work as having cancer, one is not sure what is around the corner and this system would be able to accommodate any changes. I was wrong.
How I feel about this, I am now 61 and invisible. It’s had a profound effect on my self-worth been as I have not been able to contribute to my family financially. Those living well with cancer should be encouraged to work and be part of mainstream society. It’s a win/win for the people living with cancer and their families and the economy.
7. Adjusting to early retirement
For me this is a new realisation. I am now not so angry that I cannot work and have become quite the domestic queen. Mind you I don’t find it fulfilling but at least its filling my days. Fortunately, I was well enough to do a bit of travelling with my husband in 2014. I am not complaining, but it’s probably our one and only opportunity. My husband works very hard but is unable to earn enough to pay our bills. Our quality of living has dropped and will continue to do so. We have cut down our debts as best we could but now find we will need to go back into debt due to cost of living. Not an ideal prospect.
8. Financial Impact having ABC
Having lived with ABC and having a husband who has his own health challenges, our medical out-of-pockets have been significant, in the vicinity of $55K which are over and above even with top medical cover. I have also paid $15,000 for a life saving drug prior to it becoming available on the PBS. We have now made the decision to downsize, to be close to a medical precinct, shops and public transport. I am not allowed to drive presently which has affected my independence dramatically as nothing is walking distance from my home.
Latest change in my health is due to side effects from long term treatment. My disease is mostly under control, but your body can only take so much.
In 2016, I had fractured in both femurs due to a drug ironically was given to strengthen my bones but did the opposite. This has been my “biggest” health and lifestyle challenge. It took 12 months to get over. At times I was bed ridden and in a wheelchair. Through extensive rehab, physiotherapy and exercise physiology, I am back on both feet. During that time, I sought external help and quickly discovered there was a real disconnect for patients and services on offer. This needs to improve. I discovered pallative care which did have services that could have helped, but I learnt about them too late. As I now have no income I resorted to seeking out services available through my community centre and the Council. Quickly discovered you had to be “65” for the council to help you even though I am on a disability pension. Had to pay for a cleaner myself.
18 months go I underwent brain surgery to remove a 5cm cyst attached to necrotic tissue which is what remained from a lesion that was treated through radio stereo surgery.
Another setback. This part and parcel of my existence. The outcome because of small visual interruptions which are deemed seizures, I am not allowed to drive, taking away my independence.
Having said this, I do believe I have never lost myself. “Cancer” has challenged who I am but through it there has been a lot of self-discovery along the way. Some of it good some of it bad. My circumstance has not allowed me to forget “cancer”. Living with cancer, you overcome one hurdle, feel good for a while, then it’s back again. Because of this, I have lost my personal sense of safety and health.
I hope what I have said resonates with some of you living with Advanced Breast Cancer. I decided to put pen to paper as sometimes we find it hard to express our game changers and I think it’s helpful to open up, break down emotional walls and realise you are not alone in dealing with these changes. Advanced Breast Cancer presents a myriad of challenges as everyone’s journey is different.
Bye for now.
BCNA Consumer Representative
Living with Cancer for 13 Years