Dear G, B and E
This is going to be a hard one, and I’ve thought about writing it for the last few weeks, for me as much as for you.
In July this year, Pops was on holiday with uncle Henry and Caz in Devon when he had a strange turn and became a little vacant in his behaviour. They were at the Eden Project and he wandered off and was not very responsive when they did catch up with him. Caz took him to hospital as she thought it might be a urinary tract infection (apparently common in old people and can have these symptoms), but they scanned him and found a large brain tumour in the middle left side of his head.
Henry called to tell me and my first thoughts were that it was something we could deal with and get through, with operations and treatment. After speaking to him, I looked up all the different types of brain cancer that are out there (and there are a lot) and my hope was given it’s first reality check. In younger people, when tumours are caught early and in places where they can be removed then survival can be good, but most of the time things are not so.
I wanted to be with him so jumped in the car and drove the 5 hours down there in a strange and desperate mood, a kind of fuzz around me. I was in a rush and everything seemed to be going wrong: the traffic was terrible and then my rear tyre exploded. I managed to limp to a garage and eventually got the hospital to find dad in bed and not able to speak. His mobility was restricted and they had given him heavy doses of steroids to bring down swelling in the brain. After a couple of days of frantic phone calls to every doctor mum and dad know in Wolverhampton we got him transferred and allocated a space to see a specialist at the hospital in Birmingham. I drove them home in a nervous silence, dad just occasionally getting angry with somebody else’s driving.
People heard and started to visit, not really knowing what to say and drinking a lot of Dad’s wine. They are lucky to have so many close friends, but things like this hold up a mirror to their own mortality and some don’t know what to do with that reflection.
I sent the notes from Devon to a neurosurgeon friend of uncle Charlie’s and got my second reality check. I’ll never forget his words, they were powerful and awful. He said, “start making the most of him.”
In some cases of glioblastomas they can “de-bulk” the tumour through surgery and put chemotherapy wafers that dissolve right in the the brain, but Dad’s is inoperable. Radiotherapy can slow it’s growth but nothing can shrink it or stop it. Even if these are caught relatively early, almost 100% of people are dead within 5 years. Most people are dead within 1 year of diagnosis.
He had a biopsy and cried as he was wheeled away to surgery, one of the most heartbreaking things I’ve seen. The results were what we expected and that he has less than a year of palliative care.
I managed to arrange for him to come to Wales as part of our summer holiday in August and was so glad he got to see the village again and so many of the people he loves down there. My ‘fairly’ godmother (fairly because I was never actually christened) Bente flew over from Norway to help mum and stayed for weeks. She was amazing in so many ways and our family owes her a great debt for this selflessness.
He started radiotherapy 4 weeks ago, dual with chemo, which only works on a small proportion of brain cancers because of the brain/blood barrier. They make a mask to hold your head in place and then zap the active areas of the tumour when you are in it, accurate to the millimetre. A few hours after his first session he had a seizure and was hospitalised. He totally lost speech and much of the use of his right side, including walking and good use of his hand. He was confused and would get stuck on words and repeat them over and over again. He has spent three weeks in hospital in the oncology ward, which is not somewhere you want to spend time. The guy opposite died not long after dad arrived, people spend their nights coughing up blood. The good thing about hospital was that he could start treatment again and he could get speech therapy and physiotherapy every day, which quickly improved him, but he is still absent in many ways. We’ve already lost so much of him.
My first visit to him in this state put me in a misery I don’t remember ever feeling. I cried and cried for him, mostly on my own, sometimes uncontrollably in the car or anywhere out of sight, for the indignity of such a great and lovely man and for his helplessness.
The cruelty of this compared to other cancers is that it affects the brain and therefore slowly steals the person an inch at a time. The cancer itself just grows on the outer edge and then dies inside, leaving necrotic tissue in its wake. An existence with one goal: to squeeze into space that should be used for Dad’s brain and kill him.
The small mercy of it is that I don’t think he fully cares about his situation most of the time. He reads, but I don’t think he absorbs. He watches endless TV but I don’t think he really follows what is on (judging by the crap he is watching). He is there and is still caring, he still loves a hug and kiss, he still enjoys food and the whiskey we sneak into the ward.
Mum (Ouma) is battling on but her heart is crushed. Knowing that he is dying is to prolong grief, but it also prepares her and us for the end. Dealing with practical things makes you forget and being in the moment is how we get through life. You three children are a massive help to me and that I know he would all be so proud of what lovely kids you are. I wish he could live longer to get to know you as adults and that thought always makes me cry.
It looks like he is coming home today, back to the house he has lived in for 35 years, which is wonderful news. It will be hard for mum but much better for him.
I’ve had to leave on a plane, which is where I am now, on my way to Korea again.