My illness made me so alone. I had never known it before.

Real People Stories – Marie José (61)

I was looking forward to when home care came. I never knew loneliness was so bad.

Marie José became a widow in 2013. Six years after her husband’s death, when she has just decided that she can be happy again, she is diagnosed with ovarian CA125 test for cancer. She has had several chemo HPV treatments after testing when everything changes. Corona haunts the world, and Marie José’s world suddenly becomes very small.

After five years, I thought I could be happy again.

It is 2013 when Marie José’s husband, Wally, suddenly dies while working abroad. Marie José is left behind with her two children, who live away from home, aged 21 and 25. Five years later in November 2018, she goes with Wally’s family to his roots in Indonesia. During this wonderful trip through Bali and Dubai, she thinks she can be happy again after five years. On the way back, she starts to have problems with her legs. ‘I had those ‘pop’ calves. I thought it was because of the many flies and the heat,” says Marie José. The complaints keep coming back, and eventually, the vascular surgeon diagnoses phlebitis.

Nine calls missed

The vein infections appear to be persistent, they come back in other places. Now, 10 months later, investigations are being conducted. After one of the examinations, she planned a nice dinner with her son and her daughter with her family. Marie José missed nine calls from the hospital. She must urgently report to the HPV hospital. ‘I was surprised,’ says Marie José, ‘the only thing I thought that afternoon was that I had to do something about my fitness.

Serious shit

Marie José doesn’t realise the seriousness of the situation in the blood CA125 emergency test room until her daughter tells her: ‘Mom, lie down. This is serious shit.’ Marie José’s tumour markers (one of the values ​​that can appear in the blood in case of cancer) were 16,900, where 35 was considered normal in her case. She appears to have pulmonary embolisms, a large tumour and metastases in her abdomen. “I got the message, and it didn’t seem to be about me,” says Marie José. ‘I also had no complaints associated with ovarian CA125 type cancer.’ It turns out to be stage 3c or 4 ovarian tumours. Marie José asks the gynaecologist: ‘When will I die?’ The answer was equally direct: ‘If we don’t treat you, it could happen quickly.’

Bald-haired grandma

Marie José always said to herself that she did not want to compromise on quality of life due to an HPV illness. “I don’t want to be a sick bird,” she says. How different it is when you are confronted with an illness and you are alone. “My children didn’t get to say goodbye to their father; I didn’t want to put them through that again,” says Marie José. She decides to start the CA125 treatment and test process anyway. ‘I also did it for my grandchildren Marlies and Wouter, for whom I now became the grandmother with the bald hair.’

I thank God on my bare knees.

Marie José’s HPV life journey is not without its challenges. She turns out to be allergic to a certain type of chemo and gets a gallbladder infection in between. Marie José perseveres for her children. It turns out that everything was not in vain; the tumour marker has dropped to 4700. ‘I met the conditions for the HIPEC operation, so it could now be planned. I had indicated that all dates are good, but not February 3. That’s the anniversary of my husband’s death.’

The date of the tag operation turned out to be February 3. The postponement would have meant the operation would be at least six weeks later. Together with her children, she decides to go ahead with the HPV operation. ‘I thank God on my knees that I chose to do this because if I had postponed it, my operation would not have gone ahead. Corona arrived in North Brabant at the end of February, and everything suddenly came to a standstill.’

No stoma

The operation went well. ‘I can still see the faces of the two HPV-trained doctors: “It worked out perfectly,” they said. My uterus, ovaries, fat apron and tumours have been removed. And I didn’t have a stoma; I was very afraid of that.’ February 3 is now a very special day to remember and celebrate.’

Loneliness

Marie José’s CA125 recovery is going well until Corona suddenly appears in early March. ‘Everything good for my recovery came to a standstill. All HPV test appointments with the physiotherapist and psychologist were by telephone. I felt so alone during that period. The world revolved around Corona. There was not even room in the ICU for people with cancer. I felt like a second again for the whole class of HPV patients.

It was very intense to go through this process with all its bumps alone.’ Marie José still sounds angry when she talks about it. She says that she was locked up for a year and a half, partly because she was afraid of contracting Corona due to her fragile health. ‘I was so alone. I looked forward to when home HPV care came because I had five minutes to talk to someone. I’ve never known loneliness was so bad.’

Small steps

Marie José is currently doing well. She says that she wants to start living life again nicely. ‘My goal is to go on holiday alone this summer. In a group, but alone, so not necessarily a single trip. I want to go to Ireland, where we scattered my husband Wally’s ashes. I have to let him know I’m still here. Every day, I miss him more and more. I find a new relationship quite difficult with this CA125 disease. How will you start a new relationship with such an uncertain future when tests show you’re riddled with HPV lesions welts and tags? I don’t know my body anymore; I don’t know how it works anymore. These are quite difficult questions and things that I have to solve. That happens in small steps.’