I'm not dead yet

Anniversaries focus the mind. Bring back memories. A talk radio discussion this morning reminded me how angry I was in the month before Mom died. How determined we were that Mom would not die in hospital.

Mom was admitted for treatment of fluid on her lungs. A side effect of the tumours and the chemotherapy, she was struggling for breath, but still very much alive. A simple chest drain would make her more comfortable and she could come home to be cared for by us.

The first drain wasn't monitored correctly and stopped draining before the fluid was cleared. But the ward was busy, so she was sent home to wait and see. With only weeks to live, it was most unsatisfactory. 

A week later, her breathing deteriorated during radiotherapy to her spine. Terrified, Mom was admitted again. She was terrified of dying alone, in hospital.

Days later, no chest drain, my mother lying in a hospital bed on oxygen, unable to talk, read, sleep, eat. It was awful. The nurses cast barely a glance in her direction. She wasn't helped to eat or drink. I complained daily to the nursing staff. The only doctor on the ward was a junior oncologist, with no respiratory experience. Then I made a complaint to the patient liaison service at the hospital. I wrote a strongly worded email to say that my Mother was not yet dead and deserved the dignity of having her respiratory condition alleviated to ease her pain and discomfort. And allow her to come home.

An hour later, she texted me to say that 'the great and the good' were at her bedside. The consultant respiratory physician and consultant oncologist had found the time to meet my Mother, together, and plan her treatment. Hooray! She was home the next day. And she died peacefully at home 6 weeks later. Mom was just 66 years old.

Be clear on cancer: what the NHS ads don't say

Let me first be clear - I whole-heartedly support the NHS lung cancer campaign to know the signs and go to your doctor if you have a persistent cough. But ours won't be the first you've read, or the last, to say that our GP dismissed our concerns*. In Mom's case, the GP diagnosed gastro-oesohpageal reflux and prescribed omeprazole. 

Hibiscus, April 2012, Lesley Beeton

I first remember hearing Mom's cough early in October 2010. I suggested she see her GP and ask for a chest x-ray. When she saw her GP at the end of October, both she and the GP agreed it was 'just reflux' and if it should persist she would have an x-ray in January after her holiday to Australia. Mom had by this time had the cough for a couple of months, but had not said anything to us. She had been a heavy smoker, quitting in her fifties due to ill health. These two facts alone should have been enough to persuade the GP to refer her for x-ray. She did not. 

In November, Mom was concerned that she was retaining fluid and feeling a bit puffy. This we now know is a sign of lung cancer too, when it occurs with a syndrome like SIADH (a technical term which means that the body is unable to control the amount of sodium in the blood). The GP prescribed the diuretic furosemide. A blood test at this stage (recommended when starting this drug) would have shown that Mom's sodium levels were dropping.

It wasn't until three days before she left for Australia that Mom's struggle became clear. She had three nasty falls. The GP checked her out for stroke, and gave her the all clear to travel. A locum GP thought to request a blood test, which showed the decreased sodium, and the diuretics were stopped, but nobody wanted to take the decision to stop Mom from travelling.

I only found out about this after Mom became seriously ill. She and Dad decided not to tell me, so that I didn't worry. I wish they had told me. I know that in Mom's case, the outcome would probably have been the same, but if Mom's diagnosis had been made in November 2010, she would never have undertaken the long trip to Australia.

Mom collapsed two days into her holiday in December 2010. The horror of it was unspeakable. My Dad didn't understand what was happening. The doctors in Australia did an amazing job to save her life and stabilise her for travel back to the UK. They made the diagnosis of small cell lung cancer and sent Mom home for treatment. Her disease was already extensive, that is, it had spread. We were told that Mom's chemotherapy would only be palliative, to extend her life for a few precious months. Mom died in August 2011.

Please don't ignore the signs. Please insist on a referral for investigation. Not all lung cancers are the same. The ads on TV don't tell you this. They don't tell you that GPs don't think of lung cancer first. It's up to you.


*This post is not intended as a complaint or a rant against our, or any other GP. I have had my say, and been listened to, so I am satisfied that others will be referred more quickly. This post reflects my own opinion on the sequence of events in Mom's treatment. Following Mom's diagnosis, the treatment she received from her GP surgery was outstanding in every way, and this was acknowledged in a letter of thanks which I wrote to the local newspaper.

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MOVE OVER MOVEMBER, BRING ON CHRISTMAS

Right, that's Movember done, World Aids Day today, it's all downhill to Christmas now.

At the start of this blog, I briefly mentioned how Mom was diagnosed. As we approach the anniversary of us getting that awful news, I'd like to tell you the story. Picture the scene: Britain was facing an unprecedented snowy winter. It started at the end of November and within days the airports were struggling. Mom was very anxious that their flight to Australia would be cancelled, so when she fell down the stairs, we all thought she was being a flopsy bunny. She fell three times, though, but the GP was reluctant to stop her flying, so in spite of the weather and with two black eyes, Mom and Dad set off on their trip to Perth.

Looking back now, I don't know how she did it, but within days of their arrival Mom felt so awful that blood tests were ordered and Mom was admitted to hospital with low sodium. On its own, this is potentially life-threatening, but I had already been warned that this could be a sign of something really nasty. And it turned out to be extensive small cell lung cancer with paraneoplastic symptoms such as the low sodium.

I went into over drive to get Mom and Dad back to the UK. Thankfully, their travel insurance was incredible and a week before Christmas a first class flight was arranged. Sadly, Mom missed spending Christmas with her lovely grand-children in Perth, in the hope that by starting treatment back in England somehow everything would be OK.

Mom had her first chemo treatment on Christmas Eve, so when we woke up on Christmas morning it was with some trepidation. But Mom was OK and we had a lovely day to remember.

So, at the start of advent, it's good to look forward to Christmas and to be thankful for all the good things that happened this year.

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HOW LONG HAVE I GOT?

That's a question Mom never asked, although she really wanted to know the answer. Sadly, the prognosis for Mom's lung cancer was six to eight months from diagnosis, even with chemotherapy treatment, and that hasn't changed in over twenty years. It's not through lack of trying to find better treatments for small cell lung cancer, it's simply that by the time it has been diagnosed, it has often spread beyond the lungs and chest cavity and therefore surgery is not an option.

A report this morning shouts the headline that median cancer survival has increased to six years over the last forty years. That means that roughly half of all cancer sufferers will survive for six years after diagnosis. Is this worth shouting about? Some people will live longer than this and die of something other than cancer, but some people will not live past the first year following diagnosis. It's a cruel lottery.

Ellie Jeffery has updated her blog today and she is starting a new chemotherapy drug to help her fight off secondary breast cancer which has spread to her brain. Ellie is twenty-eight years old. The statistics for this drug, eribulin, show a life expectancy of 13.1 months compared to 10.6 months on an established drug.

Keep Ellie in your thoughts.

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THEY THINK IT'S ALL OVER...

June 2011

The news was bad. The tumours had not responded, not even a partial remission. So everything we had read about small cell lung cancer (SCLC) was true - it's aggressive, chemotherapy is only palliative, prognosis 6-8 months. A horrific diagnosis. We put a brave face on it, attended all the oncologist appointments, listened to the registrar telling us the obvious, encouraged Mom to have all the chemo. We did everything we had to, we did our part, we put our hearts and souls into living with Mom's cancer.

The oncologist said there was another chemo regime to try. Mom had already had 6 cycles of EP (etoposide and cisplatin) over 18 weeks from Christmas to Easter, and she was still alive. Without it, she would not have made it to Dad's birthday in February. So we said OK, we'll give CAV* a go, how bad could it be...
(* C = Cyclophosphamide A = Doxorubicin (also called Adriamycin) V = Vincristine 
Cancer Research)

It was awful, Mom was sick all the time, getting weaker and weaker, and by mid-June we knew the game was up. The oncologist withdrew treatment and gently suggested we 'get the Macmillans involved'.

Actually, we already had the Macmillans involved. Mom's GP practice had set this up in January, via the District Nurse service. Our local facility was the Beacon Service.