Robert McCaigue, 32, from Braintree in Essex was diagnosed with an anaplastic pilocytic astrocytoma in April 2019. After joining the Royal Engineers as a geographic technician in 2010, his career went on to include serving in Germany, working with the Royal Navy, defence intelligence and with the 16 Air Assault brigade in Colchester.
It was during his time in Colchester in March 2019 that Robert began experiencing vision loss, balance issues, nausea and severe headaches. These symptoms were originally put down to migraines or malaria as Robert had recently returned from a deployment to Kenya.
As time went on, Robert’s condition began to deteriorate further. Robert’s wife Najette contacted 111 over the Easter weekend and an out-of-hours GP prescribed migraine medication. However, Robert’s headaches got worse and he also began being sick. So, Robert contacted his GP who referred him to Colchester Hospital for a CT scan. He was soon transferred to Queen’s Hospital in Romford for an emergency MRI scan which revealed the tumour. Heartbreakingly, this was when the young family should have been celebrating their son Harrison’s first birthday.
Robert said: “I had never even heard about brain tumours before. When I was diagnosed, I tried to approach it all as stoic and logical as possible but, in truth, I was obviously terrified. I quickly learned that searching online for things is never helpful so I refused to research my condition in the hope that it was not as bad as I thought it was at that stage.”
Surgery, including a biopsy, removed most of what was confirmed to be a high-grade tumour and so Robert also had radiotherapy at Addenbrookes Hospital in Cambridge.
Robert added: “It’s very easy being the patient. World class medical teams and equipment plus some sleep and it’s all done until you wake up wired up to machines and with the world’s biggest headache. The radiotherapy was completely painless and it felt good that the latest science was being used to help cure my cancer.”
Robert made a good recovery and trained hard to get fit again so he was able to have a phased return to work as a military engineer nine months after his diagnosis. This was around his driving suspension and ban from using any weapons. However, as the family excitedly anticipated the birth of their second child, Robert’s tumour recurred.
As the young family prepared to welcome their daughter into the world, Robert had two more operations – the first to debulk the tumour and then a second a few months later to drain fluid and insert a shunt. Baby Teagan was born in between the two surgeries as Robert did his best to cope with the side-effects it brought him.
Robert said: “I was having scans every three months then, after a year of positive results, I then had scans every six months instead. It was during this time that the tumour grew back significantly.
“I started to feel all the familiar symptoms again with the headaches and vomiting returning. After an MRI scan, I was told to go to A&E to find out why I was having these symptoms but I already knew. I started shaking and I had a panic attack knowing what was to come.
After surgery, Robert was referred for chemotherapy but this then had to be ruled out because of worsening side-effects from the steroids he was taking including muscle wastage, bone damage and diabetes. This is alongside long-term side-effects Robert also contends with including permanent hearing damage, permanent partial blindness, hair loss, nausea and fatigue.
Now, Robert has no option but to let nature take its course and enjoy the time he has left with his young family amid the ongoing pandemic. He and his family as well as any visitors have to be very vigilant and take regular lateral flow tests to avoid inadvertently passing on the infection to Robert, which could be fatal for him.
Robert is being looked after at Farleigh Hospice, which he is raising money for by writing poetry and producing digital artwork to sell which was encouraged by his therapist to help process the range of emotions he has been feeling.
Robert said: “My prognosis is not great but I am just glad that I am still here. My career has very much given me the physical and mental strength to handle it. It taught me that bad news can be handled with a “never give up” attitude, discipline and the type of pride which makes someone a good soldier.
“I set goals for myself each day including praying and exercising my mind and body as well as spending time with my friends and family when I feel well enough to do so. I also accept all offers of help from experts and my family.
“But it is, of course, not easy. I hate seeing my wife struggle and laying there helpless to do anything about it. I simply can’t be the father I had imagined to be. It makes me sad to see the seasons change on the other side of my window yet be unable to get outside and enjoy them with my family.”
Robert has been making plans to be in the lives of his children after he passes away by creating memory boxes and filling them with poems, letters, books, digitally recorded interviews and various keepsakes. He has also arranged cards and gifts to be given at various milestone throughout their lives. The family also hope they will be able to create more memories together in the future with trips to the seaside, parks, the zoo, theatre and to go swimming together as Robert’s condition allows.
He added: “I am now facing the biggest challenge of my life against an enemy which is deadly, clever, doesn’t care about my family and doesn’t give up easily. But my training as a soldier had given me a mental toughness that will see me through the most difficult of times. I am also so grateful for the support which I have received from the Army, the NHS and The Brain Tumour Charity, which has been second to none.”
The Brain Tumour Charity offers a wide range of information, advice and support to those affected by a brain tumour diagnosis in some way including the loved ones of those diagnosed. This includes online groups and forums, a support phone line and specialist services for families.
Robert said: “My friends and family have all rallied around me from the very moment when they first heard the news. Naturally, everyone was very shocked – especially given my young age when I was diagnosed. My wife was and still is an absolute rock for me. She took the new situation which we were all presented with, assessed what it would mean for our growing family and how best she could protect our children and look after me.
“The medical teams advised me to look into The Brain Tumour Charity for advice and information which has helped me massively. It’s so important to provide accurate and trustworthy information during what is a stressful, scary and confusing time.
“But I try my best to stay positive – keeping busy and maximising the ability that I have left is vital. I view each day as a gift and my religious beliefs do help with that. I also try not to worry about the conversations with doctors – when you’re terminal they can only bring you better news.”