Changing the conversation about work and cancer

Shelley Southey

I was diagnosed 7 years ago at the age of 37 with Breast Cancer. I felt a lump and had a mammogram and scan. The mammogram showed nothing (yes, nothing) and the scan showed the lump. It was big enough to feel. I had a biopsy and a week later they let me know that its NOT cancer. I was relieved. The radiologist said to have it removed anyway ‘’just in case’’.

A week later I had a lumpectomy. I wasn’t concerned because after all, they said it was not cancer. I got home the day after surgery and the general surgeon called to say it WAS in fact cancer.

Saw a Breast Surgeon a week later and she said I had to have a mastectomy as I had an aggressive cancer. Although it was stage 1, considering the type of cancer she felt it necessary to remove my right breast.

Had chemotherapy for ‘in case’ it spread elsewhere, but there was no evidence that it had and it was nowhere in lymph nodes. 6 chemos later I discovered a bump on my mastectomy scar. Biopsy showed cancer. The cancer had spread during chemo to my scar!

Now I had to have 31 sessions of radiation. However I had to have expander removed and surgeon suggested Dorsi Flap operation because aesthetically she did not feel I would cope with all the skin and a flat chest. This surgery was intense and to this day I regret having it. I have so many complications today from that surgery which was never discussed with me.  The radiation meant another 12-month delay in reconstruction.

A year later reconstruction took place and I saw my oncologist regularly after that and according to her I was in remission.

2 years later I had blood tests (which I ordered as my oncologist did not do any) and there was increase in cancer count. I had a chest Xray and abdominal scan.  Chest Xray showed spots on lungs. My oncologist went on maternity leave and ordered that I have a CT scan. I could not afford this at the time so I ended up having a mental breakdown and landed up in a psychiatric ward.

In this hospital I was seen by psychiatrist who sent me for all the scans. CT scan showed possible metastasis to lungs. I decided not to go back to my oncologist but see a lung specialist instead.

Lung specialist did a lung ‘’washout’’ and came back as ‘’no cancer cells found’’. And that is where I left it. I felt fine and I just wanted to carry on with my life.

Fast forward a few years and I started coughing. Numerous doctors diagnosed me with different things from allergies to sinus etc etc. Eventually blood test showed further increase in cancer count. Doctor suggested I go back to Oncologist.

Saw oncologist at the end of 2019 and had several scans. Was re-diagnosed with stage 4 breast, spread to lungs and possible other places.

I am now on a trial medication which consists of 3 tablets a day everyday with a week break of the one tablet a month. Monthly injections into my stomach and three-monthly scans and oncologist visits. I will remain on trial as long as it continues working. Have had about 40% shrinkage in tumours so far (on cycle 16 now).

I am now a 44 year old mom, am married. My daughter is 14. I work in admin during the day and I am a swimming coach on Saturdays. Interests are home décor, gardening, cooking and I also do belly casts for pregnant woman which I decorate with mosaics.

I work in Admin at few low-key job at the moment. I was prior to this a Personal Assistant for a corporate company but because of COVID and me being high risk they let me go. I have not been able to find another job during this time but am obviously thankful that I do have work and able to pay the bills. Well, some of them. My job allows me to work from home when I want to so I chose to do so the days I go to oncology. However, this normally means I work until about 7pm in the evenings on those days and it’s a very long day. Can spend up to 4 hours at oncology during my visits there because there are very busy and they not too worried about your time.

At this stage I do not know if I will ever be able to find work that will accommodate the time I need to take off for my health. Currently my employer is very understanding but the remuneration is very low so I am looking for a more financially viable position however should it arise will the accommodate my chronic illness? Time will tell. Its much harder in corporate, long hours and usually Managers who are not understanding so maybe it’s a blessing to be where I am now.

The medication makes me VERY tired. I have fallen asleep at work many times. Also, the oncology visits mean I take a lot of time off work and then have to catch up in the evenings which is also exhausting. It is stressful spending hours at oncology, rushing home, seeing to husband, kid, dogs, household chores and then still switch on the laptop and try concentrate on work. On top of that add a very painful stomach at the injection site!

The medication has affected my memory and I really battle to concentrate. This means I have to triple check myself at work and find I make the same mistakes all the time, which is very frustrating because I never used to be like this. I am constantly stressing that I am going to do something wrong and get fired.

I am high risk so at the moment I am supposed to work from home. I do come into the office but obviously wear a mask and have an office space far away from most people. This is also very lonely and the job is new so not many people know me nor do they know off my cancer so I cannot debrief to anyone at the office and that to me is quite hard, because sometimes you just need someone to talk to during the day, when you feeling anxious because of a scan etc etc.

My current employer allows me to work from home when I need to. They are quite understanding as there are few staff at the office that are either going through cancer or who have been through it and so they are compassionate about it.

My previous employer was not that understanding, it was corporate and they actually changed my contract so that I was only paid for the hours I worked and this put a lot of stress on me because I had just started treatment and took quite a lot of time off work for scans etc. It was incredibly difficult to juggle the two things.

Cancer and the treatment thereof is physically and mentally exhausting. NOBODY understands unless they have been through it themselves. The problem is if you look ‘’normal’’ people tend to think that everything is okay. They don’t realise that you don’t sleep, or you are in pain or you stress everyday about your mortality so much so that you now have to live with panic attacks and depression. It is draining to act normal and sometimes we just want to crawl into bed and pretend we don’t exist. But we have not choice to carry on, day for day, taking care of our husband and kids, still trying to be a good friend, wife, mother, daughter, colleague etc etc, whilst carrying this enormous burden of cancer. Its tough.