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Living With a Death Sentence

Have you ever had that debate with yourself, that when your time is up, would you want to go instantly, without any warning, or would you want to know that your time was almost up, so that you could prepare, say your goodbyes and do whatever you wanted to do?

I always thought I’d want to know.  Whether I’d tell anyone or not is a different matter, but I’d want to know.  When my dad died suddenly two years ago, I was devastated.  I felt cheated.  How could he go like that, we’d no time to prepare.  But there’s a lot to be said for the way he went.  He didn’t suffer, he wasn’t ill for any length of time, and he died peacefully, with his family around him.

Last month, my mum went to the doctor with a sore side.  Now, to be fair, my mum’s always at the doctor, she should have her own seat in the surgery!  So when she asked me for a lift, I did my normal eye roll and asked ‘what for this time’.  She went on the Wednesday, the doc didn’t like the sound of her chest and requested a chest x-ray two days later.  That same day, the doctor phoned and said that dreaded word ‘cancer’.  I had to take her back to the surgery, and before we even had our bums on the seat, he came straight out with it.  Suspicious mass, no ifs and buts, cancer, and she’s got a few months at most.   How can this be, said I (feeling extremely guilty for rolling my eyes when she’d asked for a lift).  You’ve not done any tests, or a CT scan, how can you say it’s cancer.  He apologised if his honesty upset us but told us to prepare for the worst.

So, hospital, CT scan and tests showed that her left lung had collapsed, and I had to take her for a pleural effusion the following week, and I’ll save you the bother of googling, it meant they drained her lung.  First point of confusion – consultant who saw her said that he couldn’t say if it was cancer or not, he’d have to send the fluid he drained away for testing.  Back the following week, a week of worry, stress and not being able to concentrate on anything, only to be told that the tests were inconclusive!  Is there a family history of TB?  Why yes, mum’s mum had TB and I vividly remember the huge booster we all got, which scarred my arm permanently.  Well, it might be TB said the consultant, or it might be pneumonia.  But he made mum have another chest x-ray while she was there, which showed that her lung had twice as much fluid in it, than it did before it was drained.  So, she was admitted to hospital, where she stayed for almost 2 weeks.  A chest drain fitted, attached to a bottle, and let’s just say I’ll never drink Fanta Fruit Twist ever again!  And mum looked ill.  I sat and held her hand while they did a blind biopsy – they said she was too ‘frail’ for a proper biopsy; her body wouldn’t cope with a general anaesthetic.  I can only liken it to a small tattie peeler being inserted through her back, paring bits of her lung for testing.  They call it blind, because its pot luck if they get the right bit or not.

During those 12 days in hospital, there was no continuity in terms of consultant.  You’d have a junior doctor one day, a registrar the next, all with something different to say.  ‘We can’t say TB, it will take 6 weeks for the results’.  ‘No, its definitely not TB it is lung cancer, we just can’t say what kind it is’. ‘Sorry, tests are inconclusive’.  Trying to deal with the ‘unknown’ was awful.  At least if we knew, we could plan.  What treatment will mum get?  How will it impact her?  Will she need chemo or surgery?  What if it’s not Cancer? But deep down, we knew we were only kidding ourselves; we just  knew.  On Thursday, the oncologist came to see us, and it was worse than we could have imagined.  Small Cell Lung Cancer (only 15% of lung cancers are small cell!)  it’s aggressive, stage 4 advanced and has already spread.    There’s nothing we can do, we’re looking at palliative care.  You’re too ill for Chemo, your body wouldn’t cope.  Shell shocked or what.  Excuse my ignorance, but before you get to stage 4 advanced, it has got to have gone through stage 1, 2 and 3 – so how can you say 2 weeks ago that it might be pneumonia or TB?

Mum always said that if it was cancer, she didn’t want to know how long she had.  But, my sister is home from Australia, and we wanted to know.  We’d have to make plans, will Denise have to cancel her flights home etc, what were we facing.  Mum is partially deaf, so I turned my back on her and asked the consultant, how long?  Being honest, I was thinking maybe 6 months to a year.  It was as if time stood still when he said 2 months max, but given her age and general health, coupled with the advanced stage of the cancer, in his opinion, 3 weeks was more realistic.  3 weeks???  3 weeks????  How can you tell someone they’ve got 3 weeks to live????

My sister and I, both in shock, went to another room, away from mum, and asked the oncologist to repeat what he’d said.  Both not really taking it in.  But we’d heard right the first time.  Mum was desperate to get home, and he said we had to respect her wishes.  So, duly discharged with a bag of morphine and a couple of numbers to phone if we needed help.  He also said to let her smoke, she’d been literally ‘dying’ for a ciggie the entire time she was in, if you’ll pardon the pun.  It wasn’t going to make a difference now.

So how do you get your head round that and take it in?  If she was lying in a hospital bed, hooked up to machines and on drips, then yes, you could say she looked ill.  She doesn’t look ill.  She looks old.  She looks tired and she looks frail.  But she doesn’t look like she’s got 3 weeks to live.  But that’s cancer for you.  It’s not like a broken leg where you can see the ‘stookie’.  It’s eating her alive from the inside.  And meanwhile, we’re all trying to carry on, keeping her spirits up and not let on.

Mum said she knew it was serious, by the look on my face (point to note, don’t ever play poker Karen!) but she doesn’t know just how serious it is.  She’s asked me if I’ll take her to Blackpool in September to see the illuminations.  She’s asked me to take her to Amsterdam in January to see Andre Rieu play live.  How can I tell her that she won’t be here?  So, I play along and say ‘of course I will’.  And it’s heart breaking.  I’m trying not to grieve for her while she’s still here.  I’ve moved in with her, leaving Saint David to deal with my kids and new puppy, while I’m here, supporting mum with whatever she needs – including taking her to the bingo, which I absolutely hate!  I’m showering her, dressing her, feeding her and dispensing her morphine – just in case she accidently overdoses.  But still I catch myself looking at her and thinking ‘this can’t be real’.  You don’t look that ill.

I had a wedding to conduct on Saturday in Aboyne.  I cried in the car on the way there, and again on the way back.  How can I be carrying on as normal?  What is normal now?  But, I put on my professional game face and got on with it.  I don’t think the happy couple even noticed, which isn’t a bad thing.

So, in answer to my original question, going through what we’re going through at the moment, although I felt cheated when my dad went, if there was a way to go, then that is it, and now I don’t want to know.

Living with a death sentence is awful.  Now I truly understand how some of my families feel, who have gone through the same thing, when I’m writing and officiating at their loved one’s funeral.  As you’ll appreciate, I’m not taking on any funerals at the moment, although I am committed to conducting the weddings I have scheduled over the next few weeks.  I’ll do what I do best.  Stand up, shoulders back, lipstick on and smile……..

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