The Wife of A Brain Tumor Patient Tells Her Story

Written by Shirley O’Shea

Wife of brain tumor patient Keith O’Shea, father of three girls, aged 41 at diagnosis

In May of 2015, our lives changed forever. It was a regular Saturday morning and we were trying to clean up our garden after the long winter and wet spring weather. We were starting to pot some flowers into flower-pots but Keith kept missing the pot and forgetting what he was doing. I immediately thought of the words Dementia and Alzheimer’s as I held my breath. I was 39 years old and did not ever expect that this could happen to my lovely young best friend. He asked me for the third time “Are we having any lunch?”. We had already eaten our lunch, so I gave a nervous laugh and a fake smile. There was something terribly wrong here. He was repeating himself over and over and missing some words.  I knew that lunchtime that nothing would be the same ever again. There would be no going back.  

He knew something was different. He knew deep inside by that evening. I could see it on his face. I told my mother about him and said he was behaving strangely. I told his siblings that weekend that he was being weird.  I summoned my sister, the family nurse and she came into our home to check him. By the following night, we were in A&E. After three days on a trolley and very many scans and blood tests, he was incorrectly diagnosed as a stroke patient. We spent a week on the stroke ward, surrounded by the elderly and eventually discharged with cholesterol medications and no answers. 

Roll on three months and we were privately seen by a very expensive but brilliant Neurologist who my husband’s employer had kindly offered to pay for. He monitored his scans for three months to eventually reveal a slow growing tumour, grade 2 Oligodendroglioma.  If you look this up, the survival rate is 35%. But that means 65% fatality within 11-15 years. Not a fast-growing deadly tumor…so we had time and the most important ingredient of all- HOPE.  

In the early days of diagnosis, our neurology consultant discussed the option of resecting part of the tumor which was on the occipital lobe. Controlling vision. If he removed 30% of the tumor, Keith would be left with partial blindness and tunnel vision. We agonised over this so badly. Not reading properly, not seeing a screen properly, and never driving again, not seeing his guitar properly, seeing half a person. He was more horrified by this disablement than other bad news around the diagnosis.  Although I did point out that Stevie Wonder did a wonderful job of being a musician with no vision and he would relearn to play. I do think it is probably different though if you are born with a disability rather than gaining it along the way. He couldn’t bear the thought of not seeing his children’s faces properly. Anyway, the decision was made for us when the Doctor decided against it and that the risks were too great and damaging. He may have been left in a terrible state if the tumour was operated on if not at the risk of not surviving the surgery. It is very deep in the brain and large. The tumour would have to stay and part of us accepted that with relief. Whatever time Keith would have would be with 100% vision. For the moment anyway. As far as we knew. As long as the tumor behaved.     

So after the lab people have dissected your loved ones tumour and examined the cells, they then come up with a plan of action. A mathematical calculation of your body mass, plus your radiation formula, multiplied by the chemo drugs, then remember the number you first thought of and add it all together! The numbers are overwhelming. It is a comfort that scientists somewhere can do the Math. You hang on every word and hope to take it all in. I also whished for some kind of  an app like a medical word translator for people to explain it all in real terms.. Vincristine. Lombustine. Procarbozine. It is a whole new dictionary… I didn’t know what any of the drugs were for or what they would do to him. 

With the biopsy under our belt, and the sharp exit from Beaumont Hospital, brain surgery done and dusted in a couple of hours, all we had to do now was get over ourselves and comfort everyone else. I remember all the sideways faces and uncomfortable silences, telling us it would all be alright.  Those who came to visit bearing all that food, which I ate somehow but I was permanently sick with worry and the belief that he could die. Unthinkable.  6 weeks of Radiotherapy. 6 Cycles of Chemo x 2 weeks. 8 mg of Steroids. Anti-sickness medication. Gloves to handle everything. Hundreds of numbers to remember. Counting and hoping I didn’t make a mistake with any of the drugs as well as to keep a full- time job in teaching, pay the bills and rear three young children.  

We started on a daily carotenoid supplement straight away as a relative told me it would help with his vision. We were so grateful and willing to try anything.  He was so forgetful and confused and I had to control his medications and vitamins every day. The supplements created the feeling though that we were really trying our best and there had to be another way after the horrendous sickness of the chemicals. Poison to stay alive is one of life’s great ironies. 

Even after the pharmaceutical drugs are gone, the idea of maintaining health and living with a condition, never goes away. Once a person recovers from Chemo, the side effects remain for years on end.  The brain fog, confusion, fatigue, lack of confidence as well as anxiety and eventually depression. I could talk for ages about the damage he is left with, but we try to avoid that as he has survived.  We still have hope. Focussing on his damage is negative to our though process.  We had to stay going for our children and for each other. 

We adapted our lifestyles to survive. Walking, fresh air, concentrating on nutrition and good food. Every time I went for groceries I though of what might help him beat it. We did our best to give up sugar and anything with msg or additives. We avoided fake foods and went for color, fruit and vegetables. My grocery trolley is always filled with green spinach, yellow peppers, flax seeds, blueberries, organic eggs- anything with antioxidants and anti-inflammatory properties. We ate our way back to good health and I am so grateful to live in a country with plenty of excellent foods, organic and plentiful and a salary to pay for it. Over five years later, we still live this way and our three daughters enjoy the benefits of looking even more beautiful and healthy as a result of clean living. We are not perfect of course and I love a good glass of wine and Keith opts for a low sugar red ale on special occasions.  

Last year we started on the MEMORY HEALTH® supplement and Keith’s doctor is in complete agreement that his lifestyle has improved his chances of survival. His consultant Oncologist tells him to keep doing what he is doing as whatever it is- it is working! His tumor is stable, his bloods are good, he is starting to beat the post chemo depression and his memory is no longer declining. There are times now when he reminds me of where I have left my keys. If I were to be honest, I would say that following his biopsy, radiation, chemo and the tumour itself affecting his memory and emotions, Keith’s brain is at 80% of what it was. He will never be his younger self. He forgets people’s names, our children’s names, important events, things I told him this morning, the day of the week, where he puts things… the list is endless. But I can also tell you that he is back working full time as a financial accountant, mostly working from home these days. He has trained himself back to short term memory skills once he has the information in front of him on a computer monitor. Our family life is relatively normal, he plays guitar again, remembers the chords and he can focus on living his life and building back his confidence.  Organizing his tray of Memory Health supplements is the most important task in his week.  

We will definitely continue to include these organic and natural additions to his daily life as we have everything to live for….