In Spring 2020, my sister Carol, and I lost an aunt, uncle, and father in less than a month to Covid-19. We were all devastated, but in particular, my niece Maddy. During the first years of her life, Maddy spent every Friday and Saturday with her grandparents when her parents were busy at the family bakery. So, Maddy had a special bond with her grandparents.
Losing close family members makes you reflect on life, and it brings into question your own mortality. I found I worried about my sister, Carol, in particular. She was a heavy smoker. A week after our father’s funeral, I asked my sister if she would consider stopping smoking. She had smoked since she was 14 and had never tried to quit. Carol even smoked during her pregnancy with Maddy. I could never understand this because she had tried for 14 years to have a child of her own. Smoking surely didn’t help her at this time.
During the conversation, I suppose you could say that I used the guilt card. I explained that Maddy would be devastated if something happened to her mother, and I really hoped for Maddy’s sake, if not her own, that she would stop. Carol said that she was willing to try it, but with all the stress she had at the moment, it would not be any day soon.
A week after this conversation (May 11th), Carol attended the local hospital for a check-up. She had had some gastric related symptoms, and her GP suspected that she might have an ulcer. If only that were the case. The diagnosis was a lot worse than we expected. Her doctor told her she had gastric cancer.
The news came as a complete shock. Carol did not expect to hear this at all. I had always been afraid that my sister would die young, and my worst fears were coming true. Carol was 51 years old, married and had one daughter and a foster son.
The speed at which Carol’s health declined was ridiculous. The day after hearing the diagnosis, Carol could not eat anymore without vomiting, and she could barely walk. She felt good two days before, except for some gastric acid reflux, and she was still working in the bakery. In such a short space of time, she needed home care support, and she was on tube feeding.
Sadly, the news continued to get worse. A week after the initial diagnosis was made, a PET scan showed the cancer had metastasised. Her surgeon decided to operate the following week, but we knew at this stage that her treatment options were limited. The news was no better after the surgery. The surgeon was unable to remove all of the cancer. He told Carol her prognosis was within the region of 3 months.
As a family, we were taking one knock after another. We didn’t have the time to grieve for one person before mourning the next. We had lost my aunt, uncle and father to Covid-19, and within months we are told we are going to lose Carol.
There are just no words to express how utterly devastated we all were. Unfortunately, at the same time, the company I had worked for, for over 16 years made me redundant. Covid-19 had a lot to answer for! I had a dream job as Head of Learning and Development in Northern Europe.
I loved my job, the travelling, and my team in Scandinavia. Losing my job came as a complete surprise. Immediately, I was worried about my future. I was 55 years old, and job opportunities were limited due to the pandemic. Furthermore, I was devastated about my job, losing my father, and I now feared losing my sister.
Carol’s illness put everything into perspective, though. It’s funny, isn’t it, how things have a way of working out. Now I had the opportunity to take care of Carol, her kids and support her husband, who still had to run the bakery. Currently, my sister was my biggest worry and priority. I craved to find a solution and treatment; anything to prolong her life.
I think we went into attack mode. We aimed to keep Carol alive as long as possible and to beat the odds. The next plan was to start chemotherapy straight away. A couple of years would be better than a couple of months. We thought we found different options in different hospitals, but alas, they were unsuitable for her. I searched and searched for solutions, including those that doctors did not prescribe. For example, I found details of special diets which I asked Carol to try.
Carol was willing to try making some changes to her diet but not as rigorous as I had hoped. I found this hard to get my head around. Why was she willing to undergo a treatment called Hipec in a Belgian hospital which would see her on an operating table for 14 hours? Followed by three weeks in intensive care and three months recovering while only prolonging her life expectancy from three to five months, but she wouldn’t try the diet?
I desperately begged her to fight for her health and try and take some control. However, I realised that this was her journey and her life. Carol needed to do what was right for her. It wasn’t about what I would have done. I wasn’t in her shoes and we have always been different people. My role was to support her and love her and care for her when she needed me with whatever she wanted at this stage of her life. And to support her lovely children as much as I could.
The decline in Carol’s health was dramatic, and the chemo was tough on her, and she felt terrible. She was so weak and mostly unable to get out of bed. A hospital bed was delivered and set up in the family living room. This act enabled Carol to feel part of their family life still.
Because her husband worked during the nights, and the kids did not want to be alone, I practically moved in. During the day, I helped with cooking, washing, gardening and keeping the family running. The children still had to do schoolwork, so they needed help and encouragement with their homework. Life always goes on and has to flow, doesn’t it? Losing my job turned out to be a blessing in disguise.
The time spent with my family was precious. But it was just sad to see Carol’s kids grieve for the loss of their mum. They were desperate not to lose her. On one day, in particular, our hearts were broken when Carol’s foster son (who had lived with the family for nine years) asked, ‘Can I still stay here now that Carol is ill? Am I not too much of a burden?’ You never really know what thoughts are going through the children’s minds. It had never crossed our minds that he would be scared of being taken away. He was our family.
You have to laugh in the face of adversity sometimes don’t you. The nurse who met Carol on the ward, after she had received her first chemotherapy, asked her if she had pain. She replied, no, she was okay. He replied, ‘Oh well you soon will be.’ Really, what do you say to that. We just looked at each other, pulled a face and laughed. The same nurse asked Maddy ‘Can you please get your grandma a glass of water? We all laughed about this and were united in our belief that he had a long way to go to improve his communication skills.
After six chemo treatments, Carol’s chemotherapy came to an end. It was November. Although there were times when we thought Carol was close to dying, she survived longer than first predicted. However, three days after her last dose of chemotherapy, Carol’s abdomen started to swell.
She had ascites which I believe is free fluid in her abdomen. She needed to have a catheter inserted to help drain it off. The fluid just added to Carol’s discomfort. Unfortunately, three days later, the ascites built up again. Carol looked pregnant and now couldn’t keep any food down. She was really very unwell and felt lousy. Carol was admitted to the hospital at this stage for additional care and support.
At this point, it is worth noting that one thing that had kept Carol going was her desire to see Maddy reach her 16th birthday. Unfortunately, she was in the hospital for Maddy’s birthday, but at least she was here, and we could celebrate in the hospital.
A few days after Maddy’s birthday, the doctors asked the family to come to the hospital to discuss Carol’s declining health. They were all told (together) that things did not look good. There were no more active cancer treatment options. Carol was just too poorly. Everyone agreed that Carol could go home to die.
We knew that Carol had a poor prognosis, and we could see that her health was declining. But I think we all hoped and prayed that her doctors could support Carol to live longer. However, this conversation brought the reality of the situation home to us. One just never really loses hope, but we did now.
Sadly, Carol hadn’t realised quite what this all meant. When the nurses prepared Carol to come home they disconnected her from her intravenous fluids. It was this act that made her question what was happening to her. Nobody had really explained to Carol that she was dying. The simple task of disconnecting her intravenous fluids was like taking away her lifeline. Carol called her husband to ask if this was really happening and if this meant that she was coming home to die. He had to confirm on the telephone that she only had days left to live. It was so emotional.
Carol was brought home by the paramedics in an ambulance. I will never forget the poignancy of the moment when they brought her into the living room. The room was still decorated with sweet sixteen banners and balloons for Maddy’s birthday. Even the ambulance drivers started to cry. It was just too sad.
A week after coming home, Carol died very peacefully at home. She was ready to go now. We were all with her until the end, including the children.
In the wake of Carol’s death, I sat back and reflected and mulled everything over as you do. Carol had been my world for the past six months and had been on my mind constantly. You hope and search for solutions to restore good health, you do all you can to support the family, and then you hope and pray for a good and peaceful death. You don’t want to be here, but here you are. Wanting to create a beautiful funeral and goodbye is the final act you can do for them.
I realised that life doesn’t work in the way you hope. There are things you just cannot influence, no matter how much you think and how hard you try.
My beautiful sister Carol showed me it’s okay: things don’t have to be perfect or beautiful. They just are what they are.
The way she accepted her faith with grace with a great sense of humour makes it easier for us all.
We all miss her terribly, but the grief and sadness are not as hard as they would have been if she did not go through her journey the way she did. Thank you, Carol, for teaching us and loving us and for being you and doing this your way.
And there, my year did not end. Three weeks after my sister, my mum passed away too.
If you have a story to share about your experience of poor or good communication we would like to hear from you. Please click on the link and complete the form before submitting it to us.
