A daughter’s journey…
Despite the long distance between Germany and New Zealand, Mum and I stayed close. Since I left for New Zealand in 2003, we spoke on the phone every week. In May 2019, I noticed Mum losing her smarts and memories and saying some weird stuff at times. She had perfect explanations like being dehydrated and not coping well with the heat of the early summer they experienced in Germany. When I asked her about her symptoms of not coping, she said she couldn’t think straight. In July, when I told her about my cat’s heart problems with symptoms of fluid on her lungs like grandad, she couldn’t remember her father’s condition.
On Wednesday, 17 July 2019, she collapsed: “fell” out of Dad’s arms walking out of a shop and had to sit down for a moment. Dad had noticed for a while that Mum got weird like sitting on her own in a dark room, not wanting to go outside, and issues with words for instance calling cake ice cream. Mum and Dad had been to the GP a week prior to Mum’s collapse. Mum was referred to radiology for a CT scan. The GP expected vascular issues in her brain and told them to go immediately to the hospital if anything out of the ordinary were to happen. That’s why Dad talked my mum into going to the hospital after her collapse on Wednesday afternoon. The CT scan showed Mum had a growth in her brain. The hospital transferred her on Wednesday evening to a brain tumour specialist hospital about half an hour drive away. That evening, Dad send me the shocking email. From my work on innovations at the University of Otago, I’d heard a bit about brain tumours. I found it ironic that I was a trustee on the New Zealand Brain Tumour Trust. I was hoping for a benign and easily operable brain tumour.
On Thursday, Mum had CT scans and MRIs at the specialist clinic, received a drainage to drain fluid from her brain, was in intensive care and felt much better than before. The specialist told Dad and my brother Nico, they could tell from the images that the growth was malignant. Surgery with all its risks was scheduled for Friday morning. Mum wasn’t worried. I was worried whether she’d survive surgery and how she’d come out of it. I tried to wish for the “better” brain tumour with better diagnosis and prognosis. Mum came out of surgery remarkably well! She recognised Dad, my brother Karsten (he arrived after a five hours trip to stay whilst there were still school holidays – he’s a teacher) and Mum even whispered Nico’s name when she saw him. She could move all parts of her body: relief!! The neurosurgeon told them it was brain metastasis and they’d still need to find the primary cancer. Shock! To Dad and Karsten I said on the phone: ”It’s now about quality of life rather than quantity.” I thought chemotherapy, cachexia (Mum is slim – to start with) and palliative care. I cried myself to sleep in the arms of my husband.
I guessed a primary cancer to be in the colon and was wrong. A few days later, they found advanced bronchopulmonary adenocarcinoma – non-small cell lung cancer – both sides. I was stunned. Mum would run up a flight of stairs. Never short of breath. From hindsight, the only non-specific symptom was her regular clearing of her throat. The molecular analysis of her tumour was taking time. Her amazing oncologist didn’t want to wait too long and soon started with a so-called poly-chemo therapy consisting of antibody treatment (pembrolizumab) plus pemetrexed plus cis-platin. Pembrolizumab was changing every cancer statistic for the better, so I was delighted Mum was receiving that. A friend’s mother had exceptional results of a shrinking lung cancer and liver metastasis with pembrolizumab. This poly-chemo combination became standard in the UK in May 2019. I had hope! I knew there was no guarantee, but I had hope there was a real chance other than palliative care.
To take care of the diffuse brain metastasis (I learned from a doctor’s letter for the GP that she had that), Mum was to receive full-brain radiation therapy after her first round of poly-chemo. I wondered if she would benefit from applying Mepitel film to reduce burning side effects of the skin. Otago scientists had published a study demonstrating its efficacy in side effect reduction without interference with radiation therapy in breast cancer (http://dx.doi.org/10.1016/j.radonc.2014.01.005 ). I phoned Mum’s oncologist. She said, she wouldn’t know what the radio-oncologists would use, but I should bring some with me, as I was planning to travel to Mum in the beginning of August, right before radiation would start. I spoke with the Dunedin scientists and a specialist at the radiation clinic in Dunedin’s hospital, who also recommended Epaderm or Epiderm, a cream by the same manufacturer of Epitel. They had seen remarkable healing, especially in areas where hair growth would prevent the use of the film, and even after skin damage had occurred. I shopped online and carried two big bottles of Epiderm, made in Sweden, from New Zealand to Germany. Who would have thought?
On my arrival in Germany in August, Dad opened the door with Mum clinging to his arm: Joy! Mum had balance issues: her straight or up-right was left-sided. Her long blond-grey hair was shaven off above her forehead and the rest was orange from the iodine used prior to surgery. She sported an impressive scar and old green felt pen marks on her head. Mum was euphoric. Every day was wonderful. She told Dad she loved him about fifty times a day. She loved holding his hand and having him sit beside her on the couch. Mum always had a travel diary so I brought her one for her to capture her thoughts. On my insisting, she wrote twice into her diary: “It’s a wonderful day” and “Lunch was good”. Mum’s always been a slim person – all her life. During her hospital stay she lost 9kg and that worried her every time she saw herself in a mirror. I told Mum we would manage her weight gain. In the coming weeks she gained 6kg!
Food, the most important aspect of life, was a point needing attention: The oncologist advised a well-balanced diet with plenty of fresh local produce and as little chocolate and sweets as possible. I’ve learned, in general, tumour patients require more protein than the average person. I got my hands on a list of foods listed as beneficial according to specific unwanted side effects of cancer treatments to help cancer patients coping through their treatment. The list was provided by a hospital’s nutritionist. It reinforced the need for especially high protein up-take, which is enhanced in certain combinations of foods such as spinach with boiled potatoes and fried eggs. Mum’s only side effect at that point was weight loss. Mum ate three meals and two snacks every day. It was a high-caloric high-protein diet including high quality carbohydrates, essential fats and at least two portions of fresh fruit and three portions of vegetables a day. We started the day with oats, nuts and berries in Greek yoghurt with honey and flaxseed oil. Additional challenges on the food front were to keep it simple regarding cooking techniques (Dad, aged 78, had to learn how to cook) and still keeping variety up. By the end of August when I left, Dad had two weeks plans for each meal and snack referenced to a little book describing how to cook veggies, meat and fish. My brother Karsten benefited greatly from a keto-diet when he struggled with low immunity and recurring colds and infections. Being a great fan of this type of eating, he believed a keto-diet would benefit Mum. We had few rounds of discussions between him and Dad on the phone and including me via email. It took his own link and literature to convince him to at least stop talking about it. According to literature (DOI 10.1007/s12032-017-0930-5) and the German Cancer Society (DOI: 10.4455/eu.2017.036), tumour patients should not follow a keto-diet. The keto-diet reduces uptake of carbohydrates to bring the body’s metabolism into a ketogenic state, where the body lives off its own reserves (body fat). As my mum already had no fat reserves and had lost muscle mass already, keto-diet really made no sense for Mum.
To build up muscles, I asked Mum and Dad to walk twice daily. Due to sensitivity to sunlight (chemotherapy side effect), we opted for walks after breakfast and after dinner, when the sun was less intense (and of course using sun block and a hat). Mum’s first walk was for 80 metres. She was exhausted. Day by day she gained strength. We walked at least 1km twice daily.
Two days after my arrival Mum started her radiation. The radiologist didn’t know about Mepitel skin protection or the study in Dunedin or the article about it. He explained that the skin on the skull is very tough and he’d never seen any skin breaks or bleeding from full brain radiation. Mum would lose her hair, he said. Then he surprised us that Mum would have radiation every day except for weekends. We never waited long. Mum had a mesh mask made for her head to assist with machine settings. She felt nothing during the treatment. She was just tired afterwards and she liked sucking on a peppermint during the drive back home. I read that one should avoid all stress for a radiation patient for the patient to cope best. My parents’ car was old. Its air conditioner stopped working years ago. I decided the heat in the car and changing of gears were stress factors: my dad had an automatic for decades before this manual old second car turned out to be the only family car. Dad only wanted a small car and he didn’t want to spend money. I organised three suitable and safe new cars (including a demonstration model) with air conditioning and automatic for Dad to consider. He bought the automatic hybrid. We joked, by the time he would finally get the car, Mum’s molting should be finished, too. She lost a lot of her hair but not all of it. She decided against a haircut: ”What goes goes and what stays stays.”
Mum had to see the oncologist and had her bloods checked on a weekly basis. Before her second round of poly-chemo therapy, the final pathology arrived: 55% of Mum’s tumour surface had Endothelial Growth Factor Receptor (EGFR) mutation, making her a top candidate for ongoing therapy with Targrisso or Tarceva, a pill once daily. Because we also had to consider the other 45% of her tumour surface that didn’t have the EGFR mutation and because Mum tolerated the poly-chemo so well, the oncologist decided to check via MRI whether there was any visible benefit to stick with poly-chemo. If not, we’d change therapy before round two. If yes, we’d aim for a total of up to four rounds of poly-chemo and then move on to the other therapy. We’ve learned, we couldn’t swap backwards and forwards as the tumour could develop resistance to the poly-chemo. We had to rush to get the MRI done that day. Mum said: “Walk fast and drag me with you”. Thanks to her regular exercise that worked well. We were delighted to hear that her cancer already stopped growing and spreading after just one round of poly-chemo – so we would be back the very next day for the second round. Then we had to rush to her daily radiation therapy. We learned it was the last session! Nobody told us in advance that Mum would have a total of 10 full head radiation therapy sessions. After her last radiation, we had an appointment with the radio-oncologist. He explained it would take time to see results. The cells had to divide again to show the damage the radiation had caused, which would be recognised by the immune system to clean up the diffuse cancer in the brain. It was always possible for other brain tissue to take over functions of the damaged/lost brain tissue. This too would take time. The older the patient the longer it would take. On the upside, there was reason for ongoing hope that Mum’s cognitive functions, memory and balance could improve in the future. A follow-up appointment was set for November. We were full of hope.
The second cycle of poly-chemo therapy took some strength and fitness away from Mum. Mum sometimes struggled to get up from the toilet seat. And she wouldn’t let us know, despite us waiting for her in front of the toilet door. Once, she slowly made it to the floor, sitting in front of the toilet door and we couldn’t get in to help. She couldn’t think how to get herself out of it. But she followed our instructions and got on her knees so that we could finally open the door and help her up. Soon after that episode we got a toilet seat with arm rests and a toilet chair to avoid such situations. That helped. Mum found it harder to walk and lacked some motivation. Though she showed great creativity as to why we should turn around already. She got eventually back to her average distance on her twice daily walks, but no more personal bests. Her euphoric mood had left. Mum had moments when she swore at the situation, especially when she didn’t make it to the toilet on time.
After I had left Germany to return to New Zealand and before her third poly-chemo cycle, Mum received the amazing news that her cancer had shrunk! Elated, she entered into the third cycle. But it knocked her hard. And we reached the point that Mum needed incontinence pants. Mum’s increasing weakness, breathlessness and mood was closely monitored. She suffered from oedema in her legs and arms. In my daily phone calls from New Zealand I suggested lymphatic drainage and physiotherapy, but didn’t get anywhere. Dad was more focused on the cancer, cognitive and memory impairment, imbalance, and managing day to day life. Not to forget, Dad had to learn Mum’s job of running the household, which she didn’t want to share with Dad until she fell ill. Luckily, neighbours suggested an amazing house cleaner. Dad was reluctant to start with but quickly warmed to her and to having one big problem less of keeping the house clean.
As an engineer, Dad wanted to optimise Mum’s recovery, desperate to find that “reset” button. He could only function amongst so many changes by believing everything was temporary and Mum would get better. Regardless, he wanted Mum to have the best care and treatment and to feel the best she could. When Dad’s mood was low, he worried that the brain was a computer and destroyed or deleted info could not be recovered ever. I told Dad to think of the brain like a grass paddock: thoughts and memories were like the paths that sheep created by walking them over and over again. Treatments and surgery created a little pond in the middle of some paths. Mum now needed to train thinking to walk a new path around the pond over and over again. Then she could reconnect with still existing paths. “It will take a long time”, I said, “and nobody knows when and how much will change, but there is no reason to give up hope.”
Mum never drunk enough fluids – all her life – but she was a great eater, even during illness. When she stopped enjoying her food in October, they went back to the oncologist. Mum stayed for a week on the oncology ward and had every test done. Her cancer hadn’t grown or spread. The only irregularity they could find was abnormally high inflammation markers. Mum’s immune system was working flat out. So badly, that it caused severe cancer related fatigue (CRF). The oncology ward wasn’t prepared to care for Mum’s needs. She was too fatigued to walk, to talk or to eat by herself. Mum got transferred to the geriatric ward. More nurses there meant more care. And finally, a physiotherapist arrived to take care of Mum. Her CRF had her sleeping for most of the time. Dad brought her oats breakfast to hospital ever morning, left for home midday and returned in the afternoon to the hospital until Mum was ready for the night. She got too tired to tend to her teeth. Dad did it for her. And then my very observing Dad saw Mum shaking. He told the nurse, the nurse called Mum’s oncologist who returned to the hospital on a Friday evening. Mum’s spinal cord fluid pressure was elevated but borderline. Dad struggled with the action being no action, or better being “watch and wait”.
My brother Nico and his wife Nadja lived a short drive away from Mum and Dad whilst my other brother lived a five-hour trip away. Nico had been rock-solid and reliable. He took care of so much including discussions with the doctors and the health insurance. My dad relied on him and his wife a lot. Nico and Nadja were the reasons I could cope, too. Our communication including Dad worked well. My other brother struggled to cope or to connect with us. That was disappointing, difficult and zapped energy. For weeks we were told that Mum couldn’t stay in hospital. The insurance had stopped paying the hospital a while ago and Mum’s stay was coming out of the hospital’s pocket. A social worker in the hospital also assisted with arrangements for care after hospital. It was agreed – and it was Mum’s wish declared months earlier – that Mum would come home and not go into a care facility. Nico arranged a hospital bed to go into the spare bed room at home, arranged a fancy wheel chair with all bells and whistles, and for care to come home several times a day. They, including Dad, were just looking forward to bringing Mum home and get her back on her feet, when Mum got suddenly transferred to neurosurgery. A permanent shunt was placed to assist draining fluid off Mum’s brain. Dad was excited: action! I was worried about another surgery in her condition. Mum came through surgery well and improved a lot regarding her alertness and responsiveness.
When Dad would get home from hospital in the evening, it was my early morning in New Zealand. We would spend an hour on the phone and spoke most times about the same: why, how, what one could do and how much my dad wanted the very best for Mum. Since a fill-in doctor on the geriatric ward told Dad she expected for nurses to have found Mum dead any morning, Dad started with night sweats on top of his interrupted sleep since July. After the shunt surgery, the neurosurgeon told Dad that the shunt saved Mum’s life. Nobody, especially the oncologist, ever told me how serious the situation was. And I falsely comforted myself with the thought one couldn’t die of being tired. Well, she didn’t. An immunologist told me that omega three fatty acids as in salmon could help controlling the inflammation overdrive. I told Dad. Mum then had to eat a lot of salmon.
On 4th December 2019, Mum came back home. Carer came first thing in the morning to wash her in bed and dress her upper body. She had a bladder catheter, which was a blessing because Mum hated nothing more than being wet or untidy in her nappies. Nappies were checked by nurses three times daily. Midday, Mum was dressed in pants and transferred to her fancy wheel chair. Nico organised a suitable table for the “book room” facing the other direction from the house to give Mum a change of view and to give Mum and Dad a table to eat their cooked lunches at. They also had coffee and a snack in the afternoon at the table before Mum was transferred back into her bed in the early evening. Dad had the amazing cleaner and no longer needed to drive to the hospital twice daily. All he needed to do was shopping (whilst the cleaner or Nico or Nadja were there), cooking, washing clothes and folding the dried laundry. They organised a walkie-talkie dubbed the “Gerda-phone” to never call it baby-phone. Dad took the Gerda-phone with him whenever he was not at Mum’s side. Once daily, the palliative care nurse came to check on Mum’s vitals and well-being. A physiotherapist came twice weekly to help Mum to gain strength and balance.
I arrived back in Germany for Christmas and the following weeks including Mum’s 72nd birthday. Although already asleep in the evening on my arrival, Mum woke up and recognised me immediately. She was very happy to see me coming all the way from “Argentina”. She possibly thought “New Zealand” and it just came out as “Argentina”. The next morning, she was equally surprised and happy to see me for the first time again. The same happened with my Christmas gift: a beautiful Aquamarine necklace I got from a crafts market in Dunedin. A note said, the Aquamarine would balance an overactive immune system. I was desperate enough to try. And should this not work, it would still look pretty. Mum loved it! Two days in a row it was amazing and a brand-new surprise. Then it was hers – and still pretty and loved. She’d wear it every day.
I noticed that Mum sometimes struggled to express herself but her mind was 100% her. She surprised me reading and understanding English and recognising my Kiwi husband she hadn’t seen for years on a photo of a homemade calendar. How could I help communication along? Coincidentally, a friend told me about her father in law: Clinicians meeting him for the first time would ask her for how long he had dementia. He hadn’t. Instead he had impaired vision and hearing and also suffered from a stroke. Therefore, best results in getting an answer from him were achieved, when people spoke slowly, loud and clearly and gave him time to process and formulate a response. This worked with Mum, too! She said: “Do you understand me?” “Yes, most times. Some words you use differently and sometimes I am not good enough at guessing. You’ll have to be patient with me.” We shared wonderful and sometimes funny conversations. They will stay with me forever. Most times Mum was very patient with everyone although she had lost her filter for politeness. She’d speak up if she didn’t like something. I brought all sorts of products to pamper her like in a beauty salon. I performed a gentle lymphatic drainage technique that I knew from my own experience – and Mum needed it! After 30 seconds she asked when I was finally finished, because she didn’t like it. Ah well. I tried puzzles with her to train her brain like physiotherapy for her body. She hated them. The physiotherapist saw great improvements in January, especially in Mum’s responsiveness and communication! When Mum saw success like walking a few steps with the rollator – even if assisted, she didn’t want to stop until exhaustion. Our aim was to get Mum’s legs strong so she could stand unassisted for a while and take some steps with her rollator unassistedly. I thought we could get there. For Mum I wanted that Dad could help her to go to the toilet -even via the toilet chair. There were already moments when she could tell she had to go and we could manage as long as we were two people to help Mum. But for Dad alone to do it, she’d need to be stronger. And Dad lacked confidence it would be safe without a second helper. If Mum could be strong enough for that, she could move back into her bedroom with Dad. That was my idea of success. Because Mum had asked whether Dad would sleep next door all by himself and for how long she’d need to lie “here” – in the hospital bed in the guest bedroom.
In the poly-chemo therapy drugs’ monographs I read that some of those drugs could remain in tissue for 5 months. My theory was, that Mum should get better (less fatigued) every 3 weeks from January onwards. January’s blood tests confirmed her inflammation was gone. There was good reason for her brain to continue to get better at all times as time passed. I felt positive when I had to leave to return to New Zealand in January. Mum said: “I will always think of you.” I replied the same. And she did get a lot better in January and in February, too. Since returning to New Zealand, I would ring every time at their 8.15am in the morning to speak with both of them after Mum’s breakfast. A friend and GP suggested, Mum should read out loud to train her brain with words and communication. She tried it once. Silent protest worked a treat with dad. For weeks he’d read fairy tales to Mum in the afternoon.
Dad, the ever-analysing and -optimising engineer, wanted the best for Mum. He asked the interim palliative care doctor whether she really needed daily heparin injections, because her stomach was bruised badly. The doc agreed to stop and instead increase the corticosteroid dexamethasone from 6mg to 10mg daily. Then, Mum and Dad both had a cold. I was positively impressed how well Mum’s lungs handled the coughing. For me, both together were reasons that enhanced Mum’s increasing muscle weakness and fatigue. Red flushes across her face and neck then led to start with heparin again and to a reduction of the corticosteroid, that in my non-expert opinion shouldn’t have ever increased. But reduction would need to take place slowly. Sigh – two steps back towards success. Dad observed Mum’s deteriorating ability to hear. The palliative care doc diagnosed a build-up of ear wax and organised a trip to the ENT specialist. We all had high expectations how communication would improve afterwards. It didn’t at that time, though from hindsight I felt it did get somewhat better. Dad however panicked whether her shunt was still working as Mum alertness deteriorated. She was due for a shunt check and that CT happened on 20 March. It showed that her brain image remained unchanged – relief.
Dad continued to ask for what activity would be next and when would we resume treatment for Mum. It took him a long time to realise, palliative care means there is no further attempt for therapy or cure. Nobody actually said that to me either, when I was asking Mum’s oncologist in January when she’d consider Mum for Targrisso treatment. Instead, the oncologist told me that another patient had brain tissue destroyed after pembrolizumab and that patient would no longer follow any movements. But Mum’s alive and can think! I checked out Targrisso’s side effects and found muscle wasting. Its alternative Tarceva included anorexia in side effects. With that I came to the conclusion that Mum would need to gain muscle strength to walk in and out of the out-patient clinic to be considered. Otherwise the side effects would be too dangerous for Mum outweighing any potential benefits of further treatment. For now – and maybe forever – further treatment was no option. No doctor told me that. If they did tell Dad, he didn’t tell me. However, he didn’t give up and continued to seek for ways to help Mum improve whilst struggling to see her decline. From my perspective, as long as Dad’s actions didn’t hurt or annoy Mum and made her potentially feel better – and definitely made him feel better – that was okay.
The corona virus put an extra strain on every one’s life. Dad at 79 was no longer allowed to go grocery shopping. Nico did that for him. The physiotherapist stayed away and Nico and Nadja limited their visits significantly to not introduce corona to Mum and Dad. The nurses were wearing face masks/personal protective equipment. And luckily the spirit-lifting bubbly house cleaner was very considerate with hygiene to reduce risks of bringing the virus into the household and continued to come. With less exercise and increased tiredness also whilst on increased corticosteroid and recovering from the cold, Mum didn’t change positions sufficiently for a little while and developed a pressure ulcer. Luckily that healed quickly due to careful pillow use and the amazing Epaderm/Epiderm crème. I couldn’t jump on a plane to Germany. I tried to help Dad to see the positives: Mum was here, could think, communicate to an extent, was pain-free, could breathe, was well cared for and there was hope to get better with protein-rich food and exercise. Her brain could improve every day. All we needed was time. And so far, there was no indication that we didn’t have time. There is no guarantee that Mum would get back on her feet. That reality is slowly sinking in with Dad. Everyone processes at a different pace. Back in January, Mum said to me she didn’t think it would get any better. And she asked me more than once if I’d know what was to come. I replied honestly: “No, I don’t know that. Nobody knows what exactly is happening when.”
Over the COVID-lockdown period in New Zealand, I noticed a further decline in Mum. There were many mornings that she felt too tired to speak. But she enjoyed listening to my voice. And then again, she’d surprise us all talking clearly and what she said made sense and was up-to-date. Her hair had grown back. At least she felt a bit better when looking at herself in the mirror every day. Due to COVID regulations, I try to manage my expectations, that I might not see Mum alive again. I take comfort in knowing I do the best I can and it is outside of my influence. It is hard. I do have support around me. My husband. Friends. And my boss. As soon as I can travel on compassionate grounds, I will. If that means I need to self-isolate on my return and work from a hotel room, my boss has my back. My emotions swing from gratefulness and peace to grief and helplessness. But I cherish every day I hear my mum’s voice and I write down the funny and smart things she says. Spring has arrived in Germany. Dad learned to get outside with Mum in the fancy wheel chair. I like to think there are moments of joy, peace and plenty of love.