Jennie Cohen 

My brain tumour blog

When she was told she had a brain tumour, Jennie Cohen began to record her thoughts online. Here's how she coped with the diagnosis and surgery
  
  

Jen Cohen
‘I’d survived!’ … Jennie Cohen had an operation to remove a brain tumour Photograph: Linda Nylind for the Guardian Photograph: Linda Nylind for the Guardian

7 October

Last Monday I went to the doctors after a week of furious migraines. Before I knew it I was in an ambulance to A&E, head scanned and diagnosed with a brain tumour. Probably benign, but needing to come out.

I remember thinking: "An ambulance? This is a total waste of resources." Then "A stroke doctor? Now you're just taking the piss," and then "Oh, this isn't good." Finally "Brain surgery? SHAVE MY HEAD?"

This is my second night on a short stay ward at King's College hospital in London. There are four of us in the room and last night one of them screamed, all night. Tonight it's the second's turn, while the third is on the phone shouting about how they are keeping her awake. The nurses have a lot to deal with.

9 October

What would you worry about more: strangers sawing open your skull and rummaging around to remove something stuck on your brain or what you would look like with a shaved head?

Tough call. I'd like to say that it's because I'm avoiding thinking about surgery, but I'm pretty sure it's down to vanity. I don't want to lose my hair. When it's shaved off there will just be my bumpy skull, a big beacon saying: "Look: ill person!"

15 October

When I met the registrar surgeon and team this morning they asked me what I understood about the tumour and surgery. I think I tried to be brave, and that worried them. They shot me right down and explained exactly how dangerous it is and all the possible scenarios where it could go wrong. More worryingly they said they didn't know what it was, or how bad it is and they won't know until they get it out. Until now I had thought that it was almost certainly benign and that it shouldn't be too difficult to remove. That's not what they said today. In fact they went out of their way to prove the opposite. I don't think they were trying to scare me, just manage my expectations.

16 October

One of the things that has been difficult is deciding who to tell what, and how. It isn't something you can just drop into conversation. When I first got out of hospital I made a list of all the people I wanted to tell myself, and emailed them. I was on a real high from coming home and that helped me make it upbeat and funny. They were impressed with how well I was coping.

But then I started to get down and all these people still thought I was fine. Although I had engineered the situation myself, it drove me up the wall. And so, to my shame, I started to use shock tactics on complete strangers. (Sorry, saleswoman from Thames Water).

18 October

Despite everything I am quite glad this is happening. It's forcing me to take a little time out and live at a new pace. When else do you get chance to do that? This time next week I'll be waking up with a brand new space in my brain.

21 October

I've been wondering how much thought I should put into the possible outcomes. And what side-effects I might have to live with. I think it boils down to independence. If I can manage to look after myself I'll be happy. If I can't function in meaningful employment that would be incredibly bad.

23 October

Random thoughts keep popping up. What if this is the last time I can cut up my own food? Jesus. To stop the "what ifs?" and to keep me occupied, I have saved up some last-minute tasks:

1 Pay the council tax bill.

2 Cut nails (What if...? Shut up brain, not listening).

3 Buy dressing gown.

4 Go to hospital.

Later, in hospital

I'm not sure I have ever been terrified before and it's a very strange feeling. I don't seem to be able to breathe properly. I'm going to have a massive scar when I wake up and bandages and a drain coming out of my head. That's a terrifying thought. I wish my heart would slow down.

27 October

That was quick! They came for me at about 9am. All the nurses said goodbye and good luck and it was all I could do to smile. In the lift I started to hyperventilate. My husband Oliver held my hand and we just looked at each other. This was it.

And then I was in the theatre. I tried not to look at the equipment too much and to focus on the anaesthetic. It seemed to take for ever and they were sorting through paperwork. I got the impression there was some hold up and the next thing I knew I dozed off.

When I came around I was expecting them to be still fiddling about with it. But there was my surgeon and they'd done it. I was so surprised and relieved, it was over – and I'd survived!

It's funny how well I feel already, but I'm hyper-aware of my head position at all times. Who'd have thought I'd be home 48 hours after brain surgery?

31 October

I've been thinking about dates a lot recently, and the weird symmetry of time. It was 1 October when I went to see the GP and before then, I had no reason to believe this was anything more than a bout of migraines. It was less than a month ago.

Today is 31 October. I am taking the last of my drugs and having the staples removed from my head. It will all be over by 6:15pm tonight.

Follow Jennie's progress at henriettafish.blogspot.co.uk

The fee from this piece is being donated to the King's College Hospital Trust. For more information visit togetherwecan.org.uk

 

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