Brian’s Brain

They say that you should live for today; that you never know what is around the corner, and take each day as it comes. I have had to learn that for myself and very fast.  My husband Brian collapsed at work with what initially seemed to be a stroke but during that night his brain began to swell and emergency surgery revealed a brain tumour. The surgery removed as much of the tumour as possible and analysis subsequently showed it to be a Glioblastoma – Grade 4 – in the parlance of the scary internet sites, “the great white shark of brain tumours”.

And thus he began on the ride for his life, taking mine and that of our two children with him. We survived the surgery, the recovery, the rehab, the return home, the seizures, the radiotherapy, the chemo, the personality change, the attention - welcome and not so welcome - from our family and friends. At first we were overwhelmed with concern and the help, so many specialists, nurses, doctors, physios,  so much baking, so much talking and talking. There were fabulous surprises, wonderful people, kind friends and some who disappeared.

Somehow we have got through that but then the hard yards really kicked in. Many things changed in our lives. Brian was a different person and that was  a very hard thing to accept. The previously independent-minded, laconic, hard-working, friendly raconteur was mostly silent, forgetful, and retiring. It is difficult to explain to people and difficult to watch.

 Then came th eday when the neurosurgeon showed me the second tumour growing on the other side of his brain and the large hole in the right side of his brain where the first tumour had been removed. He calmly and quietly explained that it was not possible to do anything about the second tumour as to remove it would remove too much of his brain to function. So, nothing for it but to go on the journey and try to be brave.

I left work that week. This was traumatic but also a huge relief. It had been becoming increasingly hard for to manage everything and my job was demanding. I couldn’t just go there and shuffle paper around, I needed to be able to think if I was to be effective and that was looking increasingly unlikely. So, I resigned and with the resignation came the end of any income. A frightening future indeed.

So, here we were - me marooned in the house, I had  never been home for anything more than a bit of a holiday since leaving school. It was very weird. Brian meanwhile became slower, vaguer, less communicative and looked completely different. The steroids have blew face and tummy out but seemed to have robbed his limbs; he was skinny and puffy. So he was nothing like he was and didn't even look like he was.

I wrote this blog over the course of Brian's  illness and death. It was intended to maybe help others understand what was happening and what it was like to be me.

Many people followed it and I hope it has helped some people feel a little less alone with what is a very lonely and frightening journey. 

Kia kaha -  Lesley 

 

 

27th March

This is what happened yesterday. Got up, lovely day, went for a walk in the sunshine, snaffled some cuttings from gardens I passed and generally all felt ok. Arrived home and then the cat peed on my bed. It went through the feather duvet, and through the beautiful cotton quilt and through the cotton sheets and down to the mattress. So, I started washing! 

Then I got dressed and went out and had coffee with my friend and when I came home I put the quilt in the washing machine. Then I went upstairs and found Brian on the floor of the shower, conscious, cold and unable to move. It seems he had had a seizure. Somehow, I found superhuman strength and lifted him out of the shower and got him into bed. He seemed very groggy but Ok. So while I am doing that, the washing machine is jamming with the big quilt and flooding all over the house. So, I clean it up, tug and tug until I get it out of the machine, still very wet and lug it up the stairs to the washing line outside. It is too heavy for me to lift on to the line and I drop it onto the ground where it then got dirty again.

I left it and went inside. Brian slept on.

28th March

And for today, I retrieved the quilt, hung it up to dry and tomorrow it will go to the dry cleaners.

30th March

Patience – and lots of it. Not exactly my strongest trait, In fact not really a trait I think I had before. I was always carrying the kids when they were small, rather than waiting for them to walk so slowly and picking them up and stuffing them into the car seat rather than waiting for the laborious climb into the car.

 Do you get to learn it? Find it? Grow into it? I hope I can learn somehow. It seems like life is moving in slow motion and is becoming almost surreal. We are detached from reality, well the reality of our past life and the reality of the life of others around us. The focus is becoming smaller and smaller, from the bed to the bathroom, from the bathroom to the bed, from the bed to the kitchen and there isn’t any more - I think that is the rhythm of that song about the polka dot bikini - “from the something to the  water, from the water to the shore, from the something to the something, and there isn’t any more.” Guess that is really pretty apt since there really isn’t any more.

I think patience is developed by subsuming yourself, if you have no demands, no immediacy of your own, you are able to transfer all energy somewhere else. Sound right? Not really, but it may work for me at least in the short term. And maybe the more you do it, the better you get at.

Today I worked out, that if you buy a jersey that costs $60 and you have it for six months, it costs you $10 a month to own it. A novel way at looking at clothes. I have about ten black jackets in my wardrobe (the legacy of being a working woman) so those jackets are costing me probably about $1000 a month to own. Perhaps I should start wearing them to cook the dinner and clean the bathroom!!

2nd April

Here is a picture of my new chair. I recovered it for fun and really like it. I thought that upholstery was easy, it seems it is not. Every  action that I had to do, which is not really that many, I managed to do wrong, so while it looks OK, wouldn’t really stand too much scrutiny. Crooked seams and angle-seams a bit wonky. Anyway, pretty cool for now. Now I think I will tackle the sofa cushions to match – not too matchy   matchy, just a bit. Tricky finding things to do in the house all day when Brian is asleep. It is not the same as the delicious lolling round at home on a day off, it is long and a big project is not an option, so I have to find little things to do that I can just drop when I need to. Upholstery might fit the bill for a while. Recover the whole house???

 

3rd April
So, that went well, now I have to keep on doing it do I?  Thank you all for your encouragment and support. On account of my digital ineptitude not sure what you are meant to do next. Guess just keep on writing. Hopefully I will be able to figure how to reorder the pages eventually. The link is:  lesleywallis1@simplesite.com


Brian is on a new course of chemo; for him it is not the terrifying, paralysing illness that so many other people seem to experience. He has almost no ill-effects at all, and there is hope that it may do some good, slow down the progress of the tumour and keep him alive a bit longer. Still has his hair (cut short these days) and is not sick. He is very calm and uncomplaining. Phew! The thing about a brain tumour is that it is painless; while it is taking you away so stealthily, it inflicts no pain. Not sure what would be better, stay in the moment with pain, or move away slowly and painlessly from reality.


Today I picked up the quilt from the dry cleaners and discovered that they had another one that I had dropped off in February and totally forgotten about. Talk about away from reality!!


Here’s a picture of the culprit cat – named Ted (dy). We entertained ourselves for three months when we got him arguing about the name, Reuben opting for warrior names like Sparticus and Brutus, Laura wanting boy names and me going for the hilarious options like Mark or David. Anyway, Ted was the final choice of Laura and she held firm, and as always, got her way!! Three months of arguing about the name of the cat can stop you having to talk about anything else, it worked wonders.


But, oh Wellington on a good day, why would I be grizzling about not working when I have the pleasure of enjoying this balmy benign weather. Here is Brian having his third wine at a bar on the waterfront- can’t be all bad !!

 

 

 

This is Xmas a couple of years ago. Brian and our daughter Laura. Little did we know but it was a fun day.

Brian at a bar on the waterfront - 3rd April