Marbellys Bayne
Loss of Husband, Michael, to Advanced Bowel Cancer
Photo by Riccardo Sai
Hi Marbellys! Tell us, what’s your story?
Wow this is quite a difficult one to start with but I will give it a go… I am a 48 year old woman, a person of colour, a friend, a lover, a feminist, a runner, a mother, a dog owner, a silversmith, a widow, a cancer patient and every now an again someone who likes wearing tutus just for fun.
I live in the South West of the UK, near the sea where I love spending a lot of time not necessarily swimming (the water is too cold for my liking) but simply admiring the horizon, listening to the sound of the waves and feeling the sand in between my toes.
You’ve been affected by cancer in multiple ways, both yourself and your husband were both diagnosed. First, can you share a little about your husband's diagnosis?
Michael was diagnosed with Advanced Bowel Cancer in April 2013; he had spent most of the winter leading up to that spring feeling constantly exhausted and always feeling very cold. Looking back (and hindsight is no comfort to me now), I remember how easily his fingers would turn blue and he was mostly a ghostly white. We had both talked about it and simply put it down to old age and a demanding job. Michael worked in a primary school supporting children with learning difficulties and physical disabilities; He had turned 53 on 31 December 2012.
That February, I had been away with our children for my brother’s wedding, and when we returned, he told me that he had felt really unwell during our absence and I made him promise he would make an appointment to see our GP. Blood tests showed that he had very low iron levels and he was referred to the hospital for an urgent iron infusion and further tests, which involved an endoscopy and a colonoscopy. I remember being asked to wait in a private room where a consultant wanted to talk to us immediately after the colonoscopy. Usually in the UK one is not given test results straight away - they are sent to the referring GP or specialist Doctor who then shares the results with the patient at another appointment. At that moment I knew it was serious. The consultant told us they had found a tumor, they had taken a biopsy, and they would be referring Michael to see an oncologist. Whilst we both grasped seriousness of the situation, we didn’t believe it was life threatening at that point.
A few days later, our home phone rang, it was early in the morning but Michael had already left for work, I picked up the phone to be told by an oncology nurse that they wanted to see Michael by 11 am. I explained that he’d already left for work and she asked whether I could pick him up and take him to the hospital. I remember explaining I had to go to work, and the nurse, in a very polite but firm voice, said to me “it is imperative that Michael comes to the hospital this morning and definitely not alone.” I called his work and asked one of his colleagues to get Michael out of the classroom and explain that I would be picking him up imminently to take him to the hospital. When I got to the school, Michael was confused and started arguing with me asking what was so important that couldn’t wait till the end of the school day. I remember shouting a series of expletives, telling him to get in the car.
All I remember from meeting the oncologist are the words “Michael, you are very ill,” “it is very serious,” “you need urgent treatment,” “we start on Thursday.” It was a Monday. I don’t remember the words Advanced Bowel Cancer being said, or maybe my brain blocked them out. I only learned that this is what his diagnosis was by reading his patient’s notes whilst sitting next to him helping him while away the many hours of chemotherapy.
“I kept telling myself, as if a mantra would work “I am not allowed to die.”
I know firsthand how difficult life can be caring for a terminally ill spouse. What was life like leading up to your husband’s death?
Michael had been a marathon runner, a tennis player, a cyclist, and he loved hiking. He was fit and strong and remained so, always pushing himself to keep physically strong. However he had been complaining of a crippling back ache throughout most of 2015. We had already been told that there were no more treatment options for him and that palliative care could help him maintain his quality of life until his death.
By November 2015, his pain was unmanageable. At his next appointment with the palliative care consultant she changed some of his medication and also encouraged Michael to take the full dose of morphine that had been prescribed to him. He had been scared of taking opioids in case he became dependent. I had recently been given my own cancer diagnosis (October 2015) and was also dealing with the side effects of treatment as well as understanding what it meant for me and my already emotionally strained family.
Michael was referred for a scan which discovered one tumor was pressing on his spine - radiotherapy and a hospital stay followed. After three days, he had decided to discharge himself from hospital against medical advice. He was strongly told to take total bed rest whilst the radiotherapy took effect; the aim was to shrink the tumor pressing on his spine which would hopefully ease his pain.
The days that followed seem to just merge into one big mush. Sleep was hard to come by for both of us, Michael was unable to do much by himself, getting out of bed was increasingly more difficult for him and I cannot tell even looking back how long this whole situation went on for.
In the meantime, I was doing everything - looking after our children, cooking, cleaning, and coordinating visits by our community oncology nurses who were administering my treatment three times a day. I remember I stopped eating, both a side effect of my treatment and the constant anxiety and heightened state of alertness meant I couldn’t stomach anything.
One morning I got up and got in the shower, the next thing I hear is a loud thump, as I ran downstairs I found Michael slumped at the bottom of the stairs unable to move. In the confusion I was shouting but there was no one in the house to help as the children had already gone to school. I had to drag him along the floor the 3 or 4 metres to our living room where I managed to lift, all 1.85 metres and 85 kg of, him onto our sofa.
Our eldest daughter arrived that evening with her boyfriend back from university for their Christmas break. I had been helping Michael all day move between the sofa and the toilet, getting him meals, drinks, and generally just keeping him company. I think I had texted friends to explain what had happened and they stepped in to pick up our children from their respective schools and feed them. I had been trying all day to convince Michael that the situation was very serious now and he wouldn’t give in to asking for more help. It only dawned on him that bedtime was approaching and he would have to get back to our bedroom upstairs. He couldn’t move. It took my daughter, her boyfriend and myself to carry him upstairs and get him into bed. By this point I was exhausted and I broke down telling him I couldn’t do this alone and we needed help, real help.
What followed was a flurry of activity. An occupational therapist visited the following morning and suddenly equipment started to arrive at our house - a commode, some hand rails for the stairs, a seat for the shower, a zimmer frame. Nurses started to come to the house to help care for Michael as hygiene was becoming a difficult task for me to carry. And finally the palliative care consultant came to visit to explain to Michael that he might want to start thinking about transferring to a hospice as the radiotherapy was clearly not working and she was doubtful that there would be any improvement to his back pain. Michael declined going into the hospice, so I asked if we could make arrangements in our home for him to have the care he was going to need.
Within a couple of days I had friends help pack and empty our children’s playroom so we could put a hospital bed in there. The bed was delivered and paramedics came to help move Michael from our bedroom upstairs to the newly converted room downstairs. I was constantly on the phone with so many people, professionals, social workers, oncology nurses, hospice staff, and friends who somehow stepped in and supported my children, it seems mad now but my whole attention shifted on to making sure Michael had all he needed to feel comfortable, and at times I feel guilty that I neglected my children.
I hated seeing my beautiful, strong, caring, compassionate husband, best friend, lover and soul mate in pain, it made me angry, it made me sad, it was so painful not to be able to take away his pain.
By this point I hadn’t slept properly for about three weeks and I had to confide in someone that I wasn’t coping. My community oncology nurse asked me how I was holding up and I broke down. I said I was finding it extremely difficult physically and emotionally, undergoing treatment at the same time as looking after my dying husband was taking its toll on me and I needed someone to convince him that he had to go to the hospice, I also pleaded for someone to come in and stay with him at night so I could sleep.
Hospice managed to arrange for a night nurse provided by a charity (Marie Curie) to stay the night, and it was as if an angel had stepped into my home. I was able to have 6 hours of night sleep for the first time in nearly a month.
Michael’s pain was not under control and I was having to call the community oncology service several times day and night. Eventually several people, between friends and health care professionals, convinced Michael that hospice care would be the best option for him and our family and on the 22 December 2015 he agreed to go. Once he was settled in hospice, our family suddenly felt a great weight lifted of our shoulders, the nurses, the staff, the consultants wrapped around us like a protective ring and gave Michael the best care available, his pain was under control and he was being looked after by professionals with dignity, respect and compassion.
We had a Christmas celebration at the hospice with friends dropping by and we exchanged presents. Michael had several days of being well and then going downhill before rallying again and being so well as to celebrate his 56th birthday on New Year's Eve. This cycle was repeated several times until he died, surrounded by our children whilst I held his hand on 15 January 2016.
How did you cope in the immediate days/weeks/months after he died?
The immediate days after Michael died, I cried from the moment I woke up and I cried myself to sleep almost every night. I hardly ate, I walked around like a zombie, I didn’t wash, I wore his t-shirt, jumper, and coat all of the time.
Our children would get into bed with me, I don’t even know how we all fitted in my bed.
Having to organize his funeral, contacting people who hadn’t been in touch with us for a long time and giving them the news was really hard, because I would rehearse what I wanted to say and I was not prepared to hear the shock in their voices.
I had to prepare our children for their father’s funeral service, I had to read up about how to make sure they felt included, gently encouraging them to express their feelings, emotions and preferences.
Michael left no funeral plan, so I had to come up with a plan which both honored the man he had been and included elements of some of the wishes he had expressed whilst alive. Other than that I simply made it up as I went along.
I found it difficult to cope and accept some of the platitudes that people offer when someone dies. I was highly strung for a very long time and any efforts by people to be kind to me were quickly rebuffed with anger. When asked “what can I do for you” I would say “bring my husband back to life.” When peopled said “things will get better” I’d respond with “Really? Do you have a crystal ball?”
Seeing his body in the Chapel of Rest was tough, his essence was gone, his body was just a shell.
I was angry, I was in despair and I felt ill-equipped to face life as a young widow, facing my own mortality, whilst supporting our children through their own grief.
Can you talk about a specific low point or struggle you experienced?
I have struggled many times in the intervening four years since his death. I have looked at how our children are growing up and how much he is missing out - how many memories we are not making together. Our eldest daughter graduating from University without him being there to see her and knowing that he would have been so proud of her amazing achievements. Seeing our son become an adult without his father completely floored me. Watching our youngest daughter tread the theatre boards belting out songs which would have made him whoop in excitement.
I have been very fortunate to be able to continue to travel to wonderful places after Michael’s death. I am aware I am in a privileged position when compared to other young widows and widowers, and traveling together was one of those things we loved to do as a couple, so every time I get to visit a new place without him where he never went I feel a deep sadness that I am making memories without him.
The worst times have been submitting myself to surgery knowing the only hand I want to hold before going into the operating room is his, waking up from sedation confused and expecting to see his face, only to have the realization that he is dead hit me in the pit of my stomach like a red hot iron.
How did you manage to find joy in those moments?
Oh boy this one is a hard one; this is the opposite side of the same coin. Once again, when I see our children become compassionate, funny, empathetic, and beautiful human beings, I do feel joy if often combined with the bittersweet feeling that their father would be so proud. So I make sure to tell them, “Daddy would be very proud of you” and by acknowledging it we often end up in a heap of laughter as we imagine what he might have said.
Before Michael passed away, you were diagnosed with cancer as well. Can you share a little about that? I can imagine how difficult it would be to be diagnosed with the same disease that would later take your husband.
I was diagnosed with Stage IV Neuroendocrine Cancer three months before my husband died. It was surreal. It was as if we were playing parts in a film that someone else had imagined and written the script for. Suddenly our children’s future became uncertain, and whilst we had always been really good at making sure our wills were up to date and legal guardians had been appointed, having to deal with the very real prospect that our children could be orphaned was scary, disconcerting, and I felt as if I was having an out of body experience. Telling our children that I had also been diagnosed with the same disease that was killing their dad has been the worst experience I have had in my adult life. If I had a superpower it would be to make sure no other parent had to face their children with such horrendous news.
I kept telling myself, as if a mantra would work “I am not allowed to die.”
Having people tell me “you’re so brave, I don’t know how you do it” sent me into a raging fit and I would often go somewhere and shout into the wind “DYING IS NOT AN OPTION!”
The twelve months that followed Michael’s death, I spent it in and out of hospital having treatment and surgeries. My cancer is incurable so the constant cycle of treatment, scans, tests, is never ending.
How do you have that conversation with your kids, not once, but twice?
It took a lot of discussion between my husband and I, and several counseling sessions, to decide to tell the children his full diagnosis. I felt it was important that they knew the truth because I would have found it very difficult to look them in the eye and lie. I wanted my children to know they could trust us as parents.
My husband felt different, he thought that telling them the truth was going to scare them unnecessarily. I had grown up in a family that kept many secrets from me and I remember the feeling of unease and anxiety, the feeling of impending doom and confusion as conversations were whispered and doors were closed on my face and I was told to leave the room whilst the grownups were talking, I felt excluded and as if it was my fault, and I did not want my children to feel the same way I felt. I wanted them to feel they could ask any question that came into their heads. Eventually my husband accepted that being open and honest with them was the best policy. We told them one afternoon after school, all together, we explained the type of treatment their dad would need and we said that we would tell them what we knew. We were able to write in our family organizer all of the upcoming appointments, blood tests, scans, surgeries, this also made it easier for us to explain to them whenever we had to ask friends to step in to help look after them.
Then in the Autumn of 2014, when our children were 19, 12 and 8, we were given the news that surgery and treatment had not worked and his prognosis was terminal, with the expectation that he would die within six months. Once again my husband was reluctant to be honest with our children. This time no amount of discussion or conversation would change his mind, by this point he had refused to continue going to counseling either with me or alone and for about six weeks he refused to bring up the subject with me or our children. Until one Sunday night at dinner, our son asked one of those impossible questions, first addressed to me and after I answered, then addressed to his dad: “If I was playing my first rugby match as an England player on the same day as my sister was getting married, where would you choose to be?” My husband broke down in tears at the realization that he wouldn’t even be alive to make that choice, and as he cried uncontrollably my son asked "what’s wrong dad? why are you crying?" And without preparation Michael blurted out that he was dying. This was the worst situation to be in as I had not expected it and was not prepared for their reaction. They started to scream and they each ran upstairs to their bedrooms, frightened and agitated, both had thought he meant he was going to die in the coming days. I was angry with my husband for breaking the news to them in this way and for not preparing me to deal with the fall out. This is precisely the situation that I had wanted to avoid. The days that followed were full of sorrow for all of us.
When I was diagnosed in October 2015, I knew straight away that the conversation with our children was going to be, emotionally, the most difficult thing I’d have to do as a parent. Once I understood the staging of my cancer, the prognosis and the expected treatment, I started to make preparations to tell our children. I first had to find a way of telling our eldest daughter who was now away at university. I had to tell one of her friends first so they understood why I needed them to be with my daughter the day I planned to call her. My daughter is a biologist, so I felt I had to be fully prepared for all her factual questions about my cancer. I somehow had failed to prepare to answer her very emotionally charged questions around whether she and her siblings were about to become orphans. Telling our two younger children was tough, I felt sick to my stomach and unable to utter the words “I have cancer” and when I did the look on their faces completely destroyed my soul, being unable to reassure them that I would be there for them was shattering. Having to admit that I did not know how long I would be alive completely broke me and I spiraled into despair. For several weeks after I simply walked around like a zombie. I felt numb as if I was observing the world through a glass pane.
How did you feel best supported by friends and loved ones during this time? Can you share a specific moment?
People dropping off hot meals at my doorstep, friends offering to take our children out. My son had his 14th birthday two days after Michael died and I was not in any fit state to plan a party, one of our closest friend messaged me saying they were coming over with a cake to sing him happy birthday, I was so grateful because it meant that his birthday was not completely ignored.
I have had one very good friend stay at my home so I could have a night off away. Another friend took it upon herself to drive my son to his rugby practice every week for that first year. A neighbor took it upon himself to cut the lawn in my front and back gardens for the first year after Michael died, no questions asked, he simply did it every time he did his own.
I have felt best supported when people have simply done things for us without asking us what we needed, as it meant we didn’t have to spend emotional energy deciding whether that is something we wanted or needed.
“People who are bereaved enjoy hearing about their loved ones and how they brought joy to others or how they made a difference in their lives. Say their name.”
Oftentimes cancer patients and survivors feel misunderstood by their peers who have not personally experienced a diagnosis. Anything you would like to share to help others better understand what you are going through?
Misunderstandings often happen because people confuse sympathy with empathy and because there are expectations that the normal rules of social interaction apply to the cancer patient, survivor or bereaved person. When humans have a traumatic event in their life, whether it is death, disease or divorce, all they want is understanding and acceptance, not fixing. Nothing fixes the traumatic event and often all we want is to be held, whether that is physically or emotionally. I would say to anyone supporting a person through a traumatic event, be there, show up and take action. Do not put the responsibility of deciding what your action should look like on the person experiencing the trauma. in practice this looks like this:
“I am on my way to the supermarket, send me a list of things you want me to buy for you.”
“I do not know what to say, I am here to listen to you.”
“I am thinking of you, no need to reply, I am here for you when you are ready.”
People who are bereaved enjoy hearing about their loved ones and how they brought joy to others or how they made a difference in their lives. Say their name.
Any resources that have been helpful for you - on either grief or cancer?
WAY: Widowed and Young, a UK based charity supporting people bereaved under the age of 50. In the first year of widowhood this charity was a lifeline. I met other young widows and widowers and attended many of their events where I was able to talk and share my experience of widowhood with people who got it.
Shine Cancer Support: a UK based charity offering peer to peer support to people in their 20s, 30s and 40s with a cancer diagnosis. This charity continues to be my main emotional and practical support as I continue with cancer treatment. Once again speaking and sharing with other people who have had similar experiences and who get it. The charity organizes events which are often run by volunteers who have all had a cancer diagnosis.
On instagram @thecancerpatient for uncensored, honest and on point discussions about all aspects of cancer, from the emotional to the physical, tackled with irony, satire and gallows humor.
What brings you joy now?
My dog, my children, and running are constant sources of joy. I am fortunate to live by the sea and I am able to get a good dose of it frequently. Seeing and hugging my closest friends who know me and without whom I would not have been able to survive the last four years.
My boyfriend, who has seen both the best and worst of me for the last three years, I often ask myself “how is he still sticking with me?”
Designing and making silver jewelry - a newly found passion and one which I am still learning and that allows my mind to completely switch off from everything else.
You mention your boyfriend. In my experience, the idea of moving forward and loving again, comes up repeatedly - both from widows and friends and family members of widows. Can you share a little about how you met your boyfriend and the reaction of your kids/friends/family when you started to date again? For so many people dating brings up feelings of guilt/shame/judgement/etc. Did you struggle with this at all?
I had been fortunate enough to have access to free counseling from the moment my husband was diagnosed. This is provided by our local hospice (Forest Holme Hospice) supporting those with a cancer diagnosis and their immediate family. I continued going to counseling after my husband died, which allowed me to process a lot of the anger, frustration, pain as well as my loss of identity. Also joining WAY (Widowed and Young) meant that I met several young widows and widowers in the first year of widowhood and the subject of dating after bereavement often came up. I quickly understood and accepted that there was no right or wrong timing and that I could decide whether and if I was ready to date again.
There was also the small matter of dating having moved online. I met my husband the old fashion way - he was a friend of a friend and we met for coffee, so I had no idea what online dating was like. I started reading up about it and researching which apps were better. I was mostly concerned about being safe and not exposing myself to unnecessary risks. And I was fiercely protective of my children, however I did explain to them my intentions at the same time as reassuring them that I had no intention of changing their lives or mine for the sake of a relationship. The only person I felt deserved to be told was my mother-in-law who encouraged me to “live my life” and not to worry about what other people might think. She, like me, had been widowed young and was more than supportive and understanding in my need to find companionship again.
I met my boyfriend online in the spring of 2017, and we quickly seemed to click. On our first date I decided to be 100% honest about being widowed, having cancer and having survived a near death experience in November 2016. I wanted to make sure that he knew in full the baggage I carry with me before feelings and emotions became entangled. I have never felt guilty about having a new relationship, however I guess that having had a frank conversation with my husband about whoever died first the other had full approval and support to go on to find happiness again in whichever form that took. I have struggled more with the feeling that being happy with a new person means that at times I “neglect” the memories of the good times and the good marriage we did have, so I guess this is a form of guilt. I try to honor my husband’s memory at every opportunity. I cannot say that having a new relationship has been easy - all relationships are complicated.
At first my children were reluctant to accept my boyfriend, but as time has gone on they have come to respect him. My boyfriend and I do not live together and I guess this has meant that my children’s lives have continued to be largely unaffected by my new relationship in that we remain in our family home as I had reassured them. Despite having found love and happiness once again, I find myself at times overwhelmed with grief and the confusing feeling of still wanting my husband to be around, which still takes me by surprise.
Dating after widowhood, is complicated and confusing for the heart, and it comes with many perils. However, do not let that stop you from trying it when you feel ready to, you are allowed to love and feel loved again.
And how is your health today? How do you balance an incurable diagnosis and everyday life?
Living with incurable cancer for me is like running an ultramarathon without knowing the actual distance or how long it is going to take me to finish it, and knowing that the finish line is not one I want to cross, because the finish line is my own death. I am on constant treatment, have regular tests and scans to monitor the cancer which is progressing.
I try to enjoy life when I am physically well and I take it easy when I am not. It is a challenge everyday, and every morning I have to make a commitment with myself to take each day as it comes. If I feel well and I have the energy to, I will go for a run and get on with some sort of normalcy. Recently the bad days outweigh the good ones, but somehow I carry on because the alternative does not bear thinking about it.
Want to learn more about Marbellys and her story? Follow her on Instagram at @marbellysbayne and Twitter @MarbellysB. Check out her jewelry line @DearSilverStars on Facebook, Instagram and Twitter.