The 18th November 2019 marked one year since my husband, Phil, went into hospital for a craniotomy to try and debulk some of this brain tumour.
How would I play the role of both parents, who would buy his first football boots? Who would guide him in that role that Phil was born to do.
We had been told ten days earlier that he had an extensive brain tumour and the radiology was presenting itself as high grade and malignant. Not quite the words you expect to hear when your husband is 38 and you have a two year old son. But here we were. Being told he needed brain surgery asap to save his life.
The night of Phil’s craniotomy, waiting for his neurosurgeon to call me was the longest wait of my life. A situation you never think you will be in and I am eternally grateful to one of my oldest friends for staying with me all night at a hotel just opposite the hospital. We tried to talk normally over dinner but we both could sense the underlying tone of our conversation was fear.
Looking back, there were signs that Phil was not quite right before he was diagnosed. He worked long hours so there was always a level of fatigue when he got home. But I remember so clearly such a vacant look in his eyes. The headaches came on fast and the vomiting accompanied those too.
Again, we brushed them aside as migraines but I’m annoyed at myself as I can now see there was so much more going on. I even questioned if he was depressed. I think brain tumour symptoms are so unknown also mistakable for so many other non life threatening illnesses. It is no surprise that brain tumours kill more children and adults under the age of 40 than any other cancer.
We had also been through a lot since the birth of our IVF son in 2016. There were many miscarriages and a few more rounds of IVF that left us both utterly devastated. I assumed it had taken its toll on us both and I guess seemed more plausible that my young, fit and healthy husband might be struggling with that rather than have an extensive brain tumour.
We waited just over a week for the biopsy results and I was both astounded and proud that Phil returned from hospital just 72 hours after his craniotomy. If I am honest I prepared myself for the worst. That the tumour was high grade and in my darkest times I was accepting that I may have to bury my husband before I was 40.
But then there was our son, Austin. He was just two at the time and I felt incredibly broken thinking about the possibility he may not grow up with his amazing dad by his side. How would I play the role of both parents, who would buy his first football boots? Who would guide him in that role that Phil was born to do.
It all felt incredible consuming and whilst trying to be strong for Phil and a good mum to Austin, my feelings got buried somewhere whilst I held the family together. It’s only now, almost 12 months on that I am finally seeking therapy for everything we went through and the diagnosis.
Watching someone you love have to go through so much is gut wrenching.
As we sat in front of the Neurosurgeon waiting for the biopsy results I sensed his demeanour was soft and happy. I felt we could be getting better news than we hoped and I was right. We were told that Phil’s tumour was a Grade 2 oligodendroglioma.
Quite a rare tumour, but hopefully treatable and initially the grading was at 3 but had been reduced down to 2.
Even the neurosurgeon was surprised and although that news itself – that Phil had cancer was heartbreaking, we felt like we had won the lottery. Suddenly all those immediate fears of loosing Phil seemed to vacate. Yes, there was going to be A LOT of treatment but actually we were given back some hope. What followed has been a year of brutal treatment for Phil.
Daily radiotherapy, which also coincided with an IVF round. Phil actually finished up his last radiotherapy session and literally hot footed it to Harley Street just as I was coming out of my egg collection. Phil had frozen sperm before his surgery which hopefully safeguarded some chances to expanding our family at a later date.
I am amazed at what we coped with as a couple and a family. But watching someone you love have to go through so much is gut wrenching.
You feel both helpless and useless and then also there is a level of anger when you have to solo parent and then the guilt for feeling so selfish. When I was tired, I felt scared and alone. I missed my husband.
We are now 7 cycles into chemotherapy and another two miscarriages down too. I would be lying if I said we have always coped. I have often felt like cancer trumps infertility and baby loss, so the grief of our miscarriages has sometimes been forgotten.
I’ve learnt there is no right or wrong way to cope with such diagnosis. That it’s OK to be angry, it’s OK to feel desperately vulnerable. What I will always be proud of, is my husband’s physical and mental strength to cope with such a fight.
I hope he feels proud of me too.