By Duncan F.
In 2016, my small family’s life was turned upside down. After a series of tests over the start of the year, in March my wife of 13 years, and mother to my two children aged 11 and five, was diagnosed with a rare form of terminal cancer. Her bloated and painful stomach and torso were full of ascites, caused by the aggravation of the many tumours covering her abdomen, from what was diagnosed as mesothelioma of the peritoneum.
We were thrown into a world of appointments with specialists, and overnight visits to conduct tests, before a course of chemotherapy started in July. Here there were six rounds, enough to shrink the tumours before a 12-hour operation could be performed in 2017, scraping away the disease covering her major organs, removing some, and leaving her in a coma for a week. Subsequent years have seen immunotherapy, more chemo, emergency trips to A&E, induced comas, and even a stroke leaving her ever more reliant on help from others.
Through all this, my children have started new schools, achieved amazing results, and grown into thoughtful and kind young adults. Family and friends have rallied around and supported us when needed. A terrifying 12-month life expectancy has stretched into over seven years, time that we are all ever more grateful for.
I have been in the middle of this tornado, standing by my wife as she has been pulled around, poked, prodded and operated on, changed from the woman I married. This was something we never expected when we gave our vows nearly 20 years ago, and the impact of both the disease and the change it has wrought has been immense. The life we maybe took a little for granted has gone, replaced by daily struggles both physically and mentally.
The changes have taken me a long time to process, and only recently have I stumbled across a description of what I am going through. The usual feelings of grief I understand occur when a loved one is lost, a trigger event that starts the healing process, however long that may be. Anticipatory grief however can occur with the knowledge that a loved one will be lost and will bring about similar feelings and a similar process. The anticipatory grieving process will circle around, playing the steps over and over. In my situation, the knowledge we will lose my wife is brought back to the forefront every few weeks when she has a scan, or when she is in pain lying on the sofa, or can’t eat because she is nauseous. This is a constant reminder that something bad is going to happen and that we are inevitably heading towards it, especially now with the specialists telling us there is nothing more that can be done, and a slow decline is likely the best outcome for us.
For our whole family, this has been a tough journey to take. We are all dealing with it in different ways. My children have thrown themselves into their schooling and extracurricular activities. My wife has tried to lead a more spiritual life, embracing yoga and healing. I however have resorted back to something I have dabbled with in the past. I started up a blog detailing some of the things we encounter, but mainly focusing on the impact of myself as a partner of a terminally ill cancer patient.
The act of putting words on (electronic) paper can be very soothing. I may be talking about how depression can impact my day to day, or how the fear of what we will encounter can be crippling, but I feel focused and calm after it. This is especially good as I find that my attention span has waned over the last few years, and so being able to focus on something brings positive benefits to my regular work life, and general well-being.
My blog is anonymous, as I feel that way I can be more open about situations. Only a few friends are aware. By not including too many personal details I have been able to quite openly address how I feel about topics. The stories and feelings are all true, and the situations I discuss have all happened to me and my family. I have talked about the worry I have for my children growing up in this life; the pain of seeing a loved one suffer for so long; the things we have lost to cancer; and the reasons why I hate being a carer. In particular, I like to try to discuss the thoughts and concerns going on in my head, however painful that be.
The aim was to publish regularly, but life gets in the way. I have a great many worries taking up my time, and sometimes finding the time to put pen to paper is a struggle, but I feel that documenting this process and journey may at some point help someone else. Unfortunately, lots of people are going through similar tales, and just knowing that one person has been there can help. Sadly that one person may not be easy to find. The nature of terminal illness is that you meet great people but then often lose them. I hope that by having a blog people can reach out.
I don’t always feel that there is much of a positive side to the situation my family finds themselves in, but if my experiences can give some comfort to others, that would be the silver lining.
I advertise my posts through Twitter and have found an amazing community of folk in a similar position. There is plenty of advice and help, and positive stories to help get you through what in reality is a horrible situation. I also publish using buymeacoffee.com/fletcherduU as I want to try and reach as many people as possible.
Support us by driving awareness!
Subscribe to our YouTube channel at YouTube.com/GrapGrief.