Let´s not tell Mum and Dad!

Life with cancer often throws unexpected challenges our way, and some of them can be excruciatingly difficult to navigate. After being faced with the diagnosis I was in two minds about telling my parents about my misfortune. Careful consideration and a discussion with my three-year-younger sister made me decide to keep my illness secret from mum and dad.

*

The last time I visited my parents in the Netherlands was in November 2022, two months before I got ill. We drank coffee, listened to music from Ede Staal, a singer from Groningen, and talked about the five grandsons. As always, I felt emotional when I left. The probability that one of them might die before my next visit is evident. Also, both my parents had tears in their eyes when they waved me off.  It never crossed my mind that I could pass away before them.

*

Dementia

Three years earlier, after several taxing and confusing years for my dad, my sister and me, my mother (83) was diagnosed with Alzheimer’s. At that time the situation at home had gotten out of hand as mum, who had no insight into her illness, refused help. Dad, stubbornly, had made up his mind. “I love your mother and I will take care of her,” he calmly said when I explained that they would need to learn to accept help. Sadly, unable to stand up to her assertive anger (she brushed off help from family, social nurses, cleaning staff, neighbours, physiotherapists, doctors etc.), it didn't take long before dad was sucked up into mum’s delusive world. He first became overburdened, then isolated, and sometime later depressed.

 

Since their move to a care home two and a half years ago, dad’s (82) condition has been deteriorating even further. He has had several TIA’s (transient ischemic attacks) which have affected his speech and balance, and he has also gradually become forgetful.

My sister, who lives 23 kilometres away from the care facilities and I (travelling three times a year to the Netherlands), frequently visited our parents and tried everything we could to support them. However, we quickly found out that it's impossible to interfere in the dynamics of a sixty-year-long marriage. Once a pillar of strength and resourcefulness, mum is now often angry and insolent. Dad, always solid and disciplined, gradually became a submissive and scared man.

 

Understandably, they are looking for reassurance from each other, but the balance in their relationship is completely gone and it's our dad who pays with his health for this unbalance. My sister and I often feel powerless; for instance when we heard that mum had blocked the door with a rope to keep the nurses away after dad had suffered from a TIA.

*

Living with cancer without telling my parents has been a difficult decision. The weekly phone conversations are marked by emotional struggle as well as by a determination to protect especially my thoughtful and sensitive father who might feel even more helpless in the face of my illness.

 

Mum is forgetful and shrewd. Strangely enough, she doesn’t remember how to use Facetime or Skype but frequently sits at her computer to check real estate sites. “We don’t belong here Ata,” she often says over the phone. “This is a place for handicapped people. I’m searching for a house with a garden,” she repeatedly explains. Mum doesn’t see that dad, once a fervent gardener, can’t get a shovel in the ground anymore.

 

Mum probably wouldn’t remember if she knew about my cancer but I’m nevertheless glad she can’t see me while we talk. Her sharp eyes immediately would notice my headscarf and she would ask again and again if I had cancer or some other disease.

 

Instead, she calls me when she’s upset about something and that is regularly. For instance, when a nurse comes in unannounced or when the doorbell rings. “How impolite, why do you think you can walk into my house like that. Get out! Or put that loud doorbell off, there’s nothing wrong with my ears.” Over the phone, I have heard her reprimanding staff members of the care home.

*

Living with a cancer secret of this magnitude is not without emotional challenges. Of course, I long for their support, especially on bad days. Sometimes when they’re endlessly moaning about this or that I feel the urge to shout out to them that it is my life that is in turmoil.

 

But it's pointless to tell them how I feel so I try to steer away from mum’s irritations and get some words from dad, who generally sits next to her on the couch during our phone conversation. Despite my anticipatory grief, I realise how important it is to cherish the time on the phone with them and always try to end the conversation in a positive tone.

 

I’m not always successful in calming them down but sometimes I can change the air by asking them to sing. It lifts my spirits to hear their thin voices singing old songs, for instance about a shepherd on the heath. Both Mum and Dad are good harmony singers and those precious moments on the phone are filled with happiness.

*

Luckily, my sister and I have become a solid team. We share our feelings of loss, grief, guilt and anger and have decided to divide the tasks; I follow the online daily reports from the care staff and share the written information about our parents with her. She visits mum and dad once a week with bread, milk and fruit and gives me her take on the situation. We always convey the same message to our parents. “Yes mum, dads’ bike is in repair,” we agreed to say after we had decided that cycling became too dangerous not only for dad but also for other road users.

Mum, clinging to her freedom, reacted as expected with distrust and vengeance to the “lost” bike. “Where is dad’s bike? Do you want me to take your father on my backseat to the bakery,” she snapped at me.

 

I manage to stay calm during such outbursts but afterwards I regularly call my sister to wind down.

*

Like our parents, my sister and I are both early birds. We often start our day with an online meeting. Permanent points on the agenda: mum’s behaviour and our worries about dad. On top of that we often send messages to each other. “Mum called me twelve times today,” my sister wrote to me last week. “The bike, it drives me crazy. I won’t answer,” she added. “I will call her,” I replied.  We know our parents and half a word is often enough to help each other out.

 

Despite my illness and despite the distance (2 432,4 kilometres) we work closely together to make sure that mum and dad feel heard by me and heard and seen by my sister.

 

 

Setback and a Stoma

I wake up with stomach pain. The cramps, located below the upper abdomen, come in waves. The alarm clock gives 3:00. I put on my slippers, walk to the bathroom, drink some water and take a Burana. Then I hurry back to bed.

But I can’t sleep anymore. The pain gets worse, and I gradually start to feel nauseous. I get up again and sit on the edge of the bed with my hands pressed to my stomach. The pain is better manageable that way. My husband, awake meanwhile, brings me a bucket. It isn’t long before I start vomiting.

I try to think what the cause of the pain might be. A stomach flu or food poisoning? We had an oven dish with eggplant, tomatoes, and mozzarella. All ingredients were fresh and cooked well. No dessert, only a cup of coffee. Or is this a side effect of the chemo? But my last chemo was already two and a half weeks ago. This should have been my “glorious” (long walks with friends and pizza on Friday) week before chemo nr 8 would start on Monday. I feel anything but glorious. Could it be tumour growth in my abdomen? I can’t figure it out and decide to take another painkiller, Targiniq this time as it’s heavier stuff.  The pain only intensifies.

I feel sick and worried.

You should call when you have fever or serious pain, the words of the nurse are imprinted in my mind. I don’t think I have a fever, but I certainly would classify this as serious pain, so I decide to call the hospital. 

A male voice on the phone. He tells me to come to the emergency at 8:00 in the morning. 

I take a shower and get dressed. With a plastic bag between my knees and a towel in my hand, my husband and I take off to the emergency room. 

Luckily, there are no other people in the emergency hall. I’m called in by a nurse. I don’t need to explain why I’m sitting in her office. She quickly gives me a disposable vomit bag and I’m swiftly put in a separate room where blood, urine and vital functions are tested by other health staff. Meanwhile the pain is excruciating, I feel cold and keep throwing up. 

The blood tests soon reveal that my leukocytes are too high. I’m receiving pain medication and the CT scan taken around 11:00 shows an obstruction in my bowels. Shortly after, a nurse comes with a cup of water and a straw. He tells me to drink the water while he tries to insert a nasogastric tube through my nose into my stomach. “Maybe this will remove the content above the obstruction and relieve your stomach, " he says. 

I gag and tears are running down my cheeks, but he manages to get the tube in place. Unfortunately, no fluids or gas escape through the tube. The bowel stays blocked.

It doesn’t take long before the doctor comes in. “You need immediate surgery,” she declares. I nod. I’m exhausted and feel I’m losing ground. I text my husband who was sent away earlier and ask him to come back.

At 15:37 I’m off to the operation room and at 2:50 in the morning  I’m back to the familiar gynaecological ward with a stoma glued to my stomach.

*

Hospital

In the morning the gynaecological and gastrointestinal surgeons come by my bed and tell me that the intestinal obstruction was caused by abdominal adhesions. After the previous surgery my bowels had begun sticking together and caused a blockage. They also explain that abdominal adhesions are a common complication of surgery.

“We first tried to perform a laparoscopy but your bowels were a mess,” one of the doctors tells. “So, we decided to perform an open surgery and use the previous surgery incision to release the adhesions and relieve the intestinal obstruction. Altogether it took us six hours and as you were informed about before surgery yesterday, we needed to insert a stoma.” 

“You will get 4 weeks to recover from this surgery before we continue with the last three chemos,” the gynaecologist added before leaving.

Stoma

Back in June, the reason I was so relieved upon hearing that I did not have to get a stoma was due to my previous experience as a nurse at an internal diseases ward.

For four years I had treated stoma wounds and changed the bags of various patients in the Netherlands and Germany. I didn’t mind cleaning pee and poop and was meticulous at wound care. It was a professional thing;I never felt I wanted to practice or experience stoma care on a personal level. 

I might have been technically good at stoma care but writing this epistle, I wonder now whether I, as a young nurse, had enough eye for the psychological impact of a stoma on my patients. 

I’ve been back home for ten days now and rationally understand I should learn to accept the thing on my stomach but so far, I only feel embarrassed, handicapped, ashamed, irritated, and uncomfortable.

I had no idea that a stoma would have so much impact on my lifestyle. The bag completely took over my life. It determines what I eat, where I eat, how much (or little) I eat and when I eat. For instance, I’ve noticed that it’s better for my night rest not to eat at all after 18.00 anymore.

Also, my clothes choices are affected by the stoma as the bag sits just under my waistline. All my jeans and skirts can stay on the shelves. I’m currently wearing sweatpants. Like hospital gowns, they make me feel shabby and untidy. For many this may sound like a small thing, but after I was diagnosed with cancer, I swore to myself that every day I would make an effort to get up and take care of my appearance and dress properly! For me, sweatpants just don’t classify as proper (or flattering) clothing.

Concerning my social life, I now need to carefully plan my walks with friends. Ten days after the surgery I’m back to three-kilometre walks, which is great, but gas, cramps and bloating can easily spoil my stroll. Also, afraid of leaks, I’m carrying a bag with stoma supplies and extra clothes with me all the time.  

Since January, I’ve been on sick leave, spending my time at home on most days, which gives me time to quietly get used to my new toilet routines. But I wonder how I will deal with my discomfort once I’m back to the office, or even worse: back to public life. Emptying the smelly pouch in a public toilet? Travelling by plane? Eating in a restaurant? Going to concerts or to the gym? How then? 

I know there’s a huge mental barrier here. It’ll take time to learn to cope with the thing on my stomach. But farting in public? Just writing this makes me feel embarrassed. I simply was not raised that way.

*

On the positive side, before my release from hospital the surgeon came to see me and informed me that my stoma might be temporary. “Once the cancer treatment is finished, you should come back and we’ll see if your stoma can be reversed,” she said. 

I know it might take a while as breast surgery might also be in the planning next year but in contrast to previous surgeries, this might be an operation to look forward to.