Since I got to back to Texas I find myself waking up everynight around 2 am in near complete darkness with breeze from the fan on my skin and the rumble of my husbands breathing in my ear. There in the darkness my thoughts are stuck in the ‘what if’ stage. How could I have prevented mum dying? Should I have noticed something was wrong earlier? Made her approach the doctors or operation differently? Travelled over from the states earlier or stayed longer?
I turn on my iPad to try and distract myself but at night my close vision is appalling and I can never find either of my two reading glasses. I see only vague letter shapes in the night shift screen. Anyway reading about potential nuclear war with North Korea or the horrendous aftermath of the hurricane in Peuto Rico is hardly restful. So I give up and lie in the blackness trying not to obsess over what I should have done differently so that mum would still be alive.
But I don’t know if you have ever done the challenge when someone tells you ‘dont think about an elephant’ and then all you can think about is an elephant. Well trying not to run through all the mistakes made in your mind is just as successful.
Then it struck me. The reason that, as a human beings, we all do this after someone dies is so we can learn from it. Being able to see patterns and learn from mistakes is what makes us such an adaptable and successful species.
So last night rather than fight it, I decided to organise my thoughts.
So here are the ten things that mum’s extremely rapid death from cancer has taught me. I hope they may be of help to others and that their outcome can be better than hers.
- Don’t assume your body will not work as well just because you are old. One of the classic signs of urethral cancer is having to go to the bathroom more often. But when my Mum stayed with me at Christmas and she had to go every half an hour I just put it down to age, It wasn’t and she waited another 4 months before she went to get herself checked.
- Weight loss isn’t always a good thing. My mum struggled with her weight all her life. In her last year she was pleased to have dropped 2 stone but it should also have been a warning sign.
- Malignant melanoma is not just about moles. Check for lumps EVERYWHERE. My mums was beside her urethra.
- Make sure you know what a cancerous grown looks like. As soon as her GP saw the lump she knew. But mum didn’t.
- Don’t wait. There is a two week ‘referral pathway’ for cancer for a reason. You may have all sorts of things planned from holidays to big projects at work. But be realistic and prioritise. Is a holiday now or attending a planned event worth the risk of losing all the futures events and holidays if your cancer treatment is delayed? As a side note make sure you always have holiday insurance so if something like this happens you are covered. My mum had a fabulous holiday in Venice and was able to organise an extremely successful Hooker bicentenary weekend. But doing those things meant it was two months from the cancer being identified to her having the operation to remove it.
- Always get a second opinion. You would get at least two quotes for building work and your body and health are way more important than your house. Doctors are not infallible and are limited by experience, expertise and their workload in what they can offer you. When your life is at stake its worth getting a second pair of eyes to look at the problem for they inevitably will bring additional knowledge and skill. The doctor my parents saw was a young enthusiastic surgeon who presented surgery as the way to a complete cure or at least an additional 5 years. He suggested no radiotherapy or chemotherapy. It turned out he was wrong. Another expert might well have spotted the deficiencies in his treatment plan.
- Always get referred into the oncology team. Surgeons have one approach- cut out the tumour -but oncologists will give you more options and be set up for the ongoing care you need following a cancer diagnosis. My mum wasn’t under the care of the oncology team till the end. They were wonderful but it was too late by then. Up to that point all she got was surgery, surgical care on a surgical ward with basic surgical pain management and standard surgical 8 week follow up. Ultimately this was the biggest mistake. It meant that the immediate recurrence was not picked up. Even worse mum went through 2 months of poorly controlled pain.
- Insist that you have one key doctor identified who will take responsibility for your care. This is essential as often cancer treatment is delivered by a multi-disciplinary team. In my mum’s case no single doctor took responsibility. The surgical and melanoma team both thought each other should be taking the lead. This meant arguments over who would schedule follow up scans and no unified follow up post surgery. Two surgeons performed the surgery that in theory ‘removed all the cancer’. When the surgeon who initially saw mum found out that just two months later the ‘removed’ cancer had spread to lungs, liver, lymph, bone and throughout the surgical site he told my mum it was the other surgeon who was actually the expert. But when we had contacted that ‘expert’ they said couldn’t do anything as my mum was under the original surgeon’s care.
- Don’t ignore pain. Pain is your bodies strongest signal something is wrong. No one should still be getting extreme pain days after an operation however extensive it was. My mum tolerated it not just for days but for weeks till eventually it was too much.
- Always consider that cancer might be the cause of post diagnosis symptoms . My mums back and abdominal pain was attributed to a variety of causes, from post surgery, to muscular strain, to kidney infection to even not moving enough. What actually was causing it was bone and liver metastases.
Mum’s dead. I cant go back in the past, much as I desperately want to, to change any of these things. But I really hope that the lessons I have learnt will prevent someone else lying awake at night wondering what they coukd have done different to prevent their loved one dying of cancer.