One Year – Still Here

On 11th March 2019 I was in St Cross Hospital in Rugby. St Cross is a small but excellent hospital and I’d managed to sleep in the night. I’d just had two nights in University Hospital, Coventry and Warwickshire ….two awful nights trying to persuade the lady in the next bed that 3am wasn’t a great time to go shopping in Milton Keynes and that she shouldn’t pull on her catheter. This poor lady pooed the bed one night and didn’t seem to notice. I did. There was another lady who had all her wordly goods in carrier bags next to her bed. She kept trying to persuade me to come outside (a lengthy and chilly journey in pyjamas) for a cigarette with her at all hours. She didn’t care that I was in hospital because of breathing problems and also didn’t smoke. I ended up feigning sleep when she approached the bed. Whenever she came back from her cigarette trips or a toilet visit she would start going through her plastic bags and then look at her ward mates accusingly.
“That’s odd,” she would say. “I had a purple bra and now it’s gone.”
She was especially suspicious of my family and friends and would talk loudly about missing items when they visited.
The lady opposite refused to use the call alarm and would yell for a nurse and bang her cup on the table when she needed more water and helping to the loo during the night. She kept drinking and drinking and then went to the loo at least once an hour with the help of two nurses. I wanted to shout
“Stop giving her water and she’ll stop needing the loo every bloody hour!”
But restrained myself thinking that she might have some kidney problem.
This bay featured a number of metal bins which slammed shut like someone pounding two old-fashioned dustbin lids together. The nurses used these bins through the night for gloves and medicine wrappings and paper towels. There was also a fair bit of coming and going getting Milton Keynes shopper back into bed, changing sheets, taking cup-banging lady to the loo etc. And I was on two-hourly observations so as soon as I drifted off the light would go on and the blood pressure cuff, the stick-it-in-the-ear thermometer and on-the-finger pulse and sats monitor would be employed.
It was all very entertaining but not very restful.
So I was very relieved when I was repatriated to St Cross in Rugby on the Saturday night to have a further scan. I had my own room and curtains that I could draw. I was left in peace and slept. The next day I had family visiting when a doctor came in looking very serious and asked my visitors to leave. We’d been playing with the bed, making it rise and fall, tipping it at odd angles. He explained that based on the x-ray I’d had the previous Thursday it looked like my breast cancer had returned and had spread to my lungs. The CT scan scheduled for the next day would give more information but he was confident enough of the diagnosis to tell me in advance.
The bottom dropped out of my world. I’d always known that my cancer would return but I’d hoped to have some years. Ten or hopefully more and then perhaps a slow-growing bone cancer. Not two and a half. Two and a half years was barely enough time for me to recover from the chemotherapy for my primary cancer.
I called my daughters and sister back into the room and we cried together.
The CT scan the next day confirmed that this was cancer. My brother and two consultants were in the room with me when I was told. They were seated but I was standing. I knew I had to be strong. I had to be the woman in Proverbs 31:25:
She is clothed in Strength and Dignity, and she laughs without fear of the future.
Standing enabled me to believe that I was that woman.
Just when I thought things couldn’t get any worse…..numerous brain tumours were found.
Readers of my previous blog will understand just how hard it has been for me to hang onto my dignity over the past five years. I have been subject to many procedures and treatments that have challenged my image of myself as a strong, determined and independent woman. During my hospital admission last August, I soiled myself without realising just like the poor lady I wrote about above. I was so weak at this point that I could barely turn over in the bed. I can’t even remember my admission to the hospice in September but apparently it was in a wheelchair. Another emergency admission to UHCW after Christmas brought me low. At least I was on the cancer ward in August and December and the other patients were too poorly to make fuss or noise.
As I described in my previous blog, I’ve had strangers helping me shower and dress, I’ve had many strange hands on me. I’ve had a port installed under the skin of my chest, I’ve been bolted to the table for two courses of brain radiotherapy, I’ve had fourteen immunotherapy cycles through the port; I’ve been cannulated, injected, had tubes jammed down my throat into my lungs, had tubes running into my stomach; I’ve spat, pooed and weed into pots; I’ve had numerous blood tests, x-rays, CT scans, MRI scans; I’ve had swabs of my Lady Garden, I’ve had constant diarrhoea, I’ve vomited, I’ve fallen a number of times and struggled to get up. I’ve lost the use of my car. I’ve used a stick, a wheeled walker, a wheelchair as necessary. I’ve seen loved ones cry, worry, suffer, and have their lives and plans disrupted because of me. I’ve lived with the threat of fits, stroke, cognitive impairment, dementia and death hanging over me.
I’m not going to lie; it’s been a tough year.
I’m still working on being that laughing woman ‘clothed in Strength and Dignity’. I like her. I think she would be fun and really useful around the house.
Pollyanna Moments:
There are many of these:
My lung tumours are responding steadily to the three-weekly immunotherapy sessions on chemo ward in Coventry. A number of them have shrunk.
Nine months ago I was told that I wasn’t eligible for cyber knife radiotherapy as my brain tumours were too numerous, too big and too widespread. Instead I had whole brain radiotherapy in Coventry. This succeeded in shrinking my brain tumours to the extent that five of them became eligible for cyber knife radiotherapy four months later in Birmingham’s Queen Elizabeth Hospital. I am currently awaiting results from a recent MRI brain scan to see the effects of this. I am expecting good things.
I live in a civilised country where healthcare is funded through general taxation and universally available to everyone. I haven’t had to pay for any of my treatment. Since my primary diagnosis in 2015 I reckon that my treatment has cost many tens of thousands of pounds. Cancer has had a massive financial impact on me in terms of income and earnings but I have not had to pay a penny for my treatment nor for the numerous CT and MRI scans or x-rays, nor for any medication, nor for my three stays in hospital. I have not had to submit insurance claims nor haggle with bureaucrats about what treatment will be funded. This disease is hard enough without having to worry about paying for treatment. Thank God for the NHS and for the excellent consultants, nurses, technicians etc in University Hospital Coventry and Warwickshire, Queen Elizabeth Hospital in Birmingham and St Cross Hospital, Rugby that have cared for me.
I am supported by friends and family willing to help me with all kinds of jobs, from shopping, to dog walking, cutting my grass, lifts to the hospital, long visits when I’m in hospital, trips out when I’m up to it. I have people of all religions praying for me all over the world in many languages. People care about me.
All I have needed thy hand hath provided.
Finally, I’m still here. We didn’t think I would be, but here I am. Best of all I’m feeling better than I have all year. I’m coping with the cancer symptoms, treatment side effects and the psychological rollercoaster. I’m very forgetful but still managed to win all three of our family Christmas quizzes. It is tough, it is painful and draining and tedious and sad sometimes. But I am glad to be here in 2020 with a birthday approaching. 21 again.
Hair! I have hair again.

7 thoughts on “One Year – Still Here

  1. Mary Foster

    Oh, my goodness, Ed, those first couple nights in the hospital a year ago sound like an absolute nightmare! I can’t even imagine what it must’ve been like! And you’ve been through so much this year…SO very much! I’m delighted that you are feeling better these days, and I’m very happy to read this latest update. Take good care of yourself and enjoy the coming of spring! Much love and many virtual hugs! 💜💫💐

  2. Geraldine

    Edwina or “Edda” as I like to think of you saying , my heart goes out to you. You are an amazing person and It is inspiring to read your strength and sense of humor in all the awful treatments and health upsets you are going through. Really sorry to miss seeing you at your Dads funeral ( many commiserations for your loss of a wonderful person) . I am currently locked down in Poland but hope to be back to see you before too long . Take care and sending all best wishes to you for every day and night xxx

    1. Angela Obrien

      What an amazing woman with such an upbeat attitude you have. I wish you all the best for the future and pray you continue to feel the best you can. Enjoy your birthday and I am thinking of you xx

  3. Sheila Bridge

    thank you lovely friend, you are a huge inspiration to me and to many which is ironic given how you feel about ‘inspirational’ uplifting stories. But you inspire because you are strong even though you are weak. You make me want to be the strong woman clothed with dignity and strength, I’m not sure I can be but you inspire me to try xxx


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s