During Lockdown I became reacquainted with a wonderful blog which proved the perfect antidote to the coronavirus craziness going on in the world.
Stripey Anne’s Blog – the ramblings and rants about something and nothing is a delightful and joyful account by Anne Akers, who lives in a Leeds village where people look out for each other and there is a real sense of community.
She’s a colourful and larger than life character who makes a big impression on everyone she meets, and always in the background is her supportive and much quieter husband, Noel.
But this year, he has found himself under the spotlight, for the most unwelcome of reasons as Noel was diagnosed with bowel cancer in May 2019.
Now feeling fit and well, Noel reflected on the sort of experience ‘that is on nobody’s bucket list’.
Noel was not an obvious candidate for the big C. He had a healthy lifestyle, had never smoked and rarely drank alcohol. It was while on a Park Run at Woodhouse Moor, Leeds, he realised he was in discomfort, but initially dismissed the feeling as ‘just piles’. Anne persuaded him to visit the GP, who referred him to Wharfedale Hospital, Otley, where Noel was examined by a colorectal consultant.
“Within seconds he asked if I had brought anyone with me. Anne was invited in, and in the next two minutes he gave me the diagnosis. He had found a tumour and he told me exactly how he would operate.”
Anne’s blog records:
It was a major operation, consultants don’t mince words and they don’t sugar coat messages, thank goodness, we want reality, not fantasy. So when he said it was a Major Procedure, then we listened. It would take a full day, he gave us the details, which would have been fascinating had it not been for Noel being the subject. We met the plastic surgeon, who with the best Irish accent ever, told us what she would take from here and how it would be put to good use elsewhere. These people are amazing.
The location of the tumour made for complex surgery. On the positive side, it meant there was less chance the cancer would have spread.
Noel had preliminary surgery in July followed by chemotherapy and radiotherapy, and then major surgery later in the year, which meant spending Christmas and New Year at St James’ Hospital, Leeds. As Anne recalls:
It meant Christmas this year was very different, Noel woke up in hospital on Christmas Day looking like he’s been hit with a plate of spaghetti, there were wires and tubes everywhere.
There was no Christmas pud, no shots of something warming, unless you count the morphine, and definitely no chocolate.
Noel recalls being aware of a hospital team working practically at their limit – staff were very stretched. But he is so grateful for the treatment and for the timing of the operation which could easily have been scheduled for later in 2020 when he may have got caught up in the chaos caused by the coronavirus pandemic.
“I can’t praise NHS people enough. They were very very good,” he added.
While Noel reacted to cancer procedures with his usual calmness and pragmatism, Anne treated cancer in an entirely different way as told in her own inimitable style:
We’ve been on this journey six months now. I’ve said before that it’s not a battle, because it’s not a war, though I do like to talk about kicking B*****d Cancer’s but, especially making use of very naughty swear words, it just makes me feel better! But we’re not fighting, winning or losing, we’re moving on and looking forward to new adventures in our lives and the B*****d Cancer can go and do one.
Noel found himself caught up in the rapid pace of hospital treatments, but adds it was as much Anne’s journey as his.
Anne accompanied him to all his appointments and was there every step of the way. In fact, if there was one tip he could offer to patients, he said, don’t go through it by yourself. Both Noel and Anne have worked in the NHS, so both are confident to ask questions, but he said he realised some patients could feel bewildered by the process.
“You need a second trusted person to go with you to consultations, as that tunnel vision that comes with panic can mean you don’t always take everything in,” he explained.
Anne recalls getting called into a consultation:
I don’t think there’s one day since June 24 2019, when the consultant told us, ‘it’s bad news, I’m afraid’ that the word cancer hasn’t been in my thoughts or on my lips, usually preceded by ‘b*****d’ and sometimes, when I was low on my swearing quota, ‘f*****g b*****d cancer.
From June until December, the journey has been about surgery, zapping and poisoning the tumour and then more surgery to remove the shrunken tumour. Now that surgery is done, we hoped that the journey would be smoother, a road to recovery, picking up running shoes, climbing harness and eventually skis, though that will have to wait until next season.
The pathologists have done their bit, scouring the homeless tumour for bad cells. Of course they found bad cells, that’s why they were cut out, but there were none where they shouldn’t have been. None. They had removed 20 lymph nodes and they were clear. CLEAR. Ha ha, take that, b*****d cancer.
So the meeting was to tell us that there was no need for any more chemotherapy. I couldn’t believe my ears, I was in danger of grinning so much my head would fall off. Noel was in mortal peril of actually smiling, it doesn’t happen very often, but this merited a twitching of the corners of the mouth. Hey, make the most of it.
Even though the weather was dull when we went in and when we came out, it seemed somehow brighter. The multi-storey car park glowed inside and didn’t smell of wee. Our every turn to the exit was a pleasure. Life was good. Life is good.
For Noel being treated as a whole person, and being listened to, was incredibly important. When discussing forthcoming surgery, the surgical team were interested in what was important to him and adapted the procedure accordingly. As a passionate rock climber, runner and skier, they told Noel there was no reason he shouldn’t return to the activities he loved.
For Anne, this wasn’t her first experience of cancer. Sadly, her mum was diagnosed with lung cancer more than 30 years ago.
What a contrast, then it was all about the treatment, not the patient, no flexibility, no information, it was done to you, not with you. It was a lonely, miserable, distressing, uncomfortable journey for everyone involved.
What a contrast in care and treatment today, we’re on first name terms with everyone, except the consultant of course, a bit like teachers, they don’t have first names. Yes, it’s a journey we’d rather not take, but we really feel that NHS clinicians and all the other staff are in the bus with us rather than giving our broken-down car a bit of a push.
Noel was keen to talk about his cancer journey. He’s only too aware that men are not always so vocal about their experience. He’s offered to be part of a patient experience group, which has been put on hold due to Covid-19.
Anne has used her wonderful blog to offer thanks on a regular basis to “everyone who has been and continues to be kind to us. We’ll take that kindness and pass it on to others. That’s how it works”
We’ve been on the cancer journey bus now since June, with so much support and kindness from friends and friends of friends that we’ve had to get a bigger metaphorical bus.
I’ve finally got round to writing to the hospital to thank them for joining us on that bus, it’s the sort of thing I always say I’ll do, but somehow don’t get around to it, but it is important to say thank you, it means to much and costs nothing. Well, dammit, I’ve done it. I’ve written, I’ve said thank you for involving us in the conversation, telling us your name, checking we’ve understood, giving us information, making us comfortable, making it easy to come and go for treatment, being kind, having chocolates on the reception desk and arranging regular tombolas, OK, so I didn’t mention the tombolas.
In the meantime, that crowded bus rolls on, with every seat taken, rowdy singing from the back seat and masses of love and support from so many people. Just in case I’ve not said it, thank you, it means so much to know you’re on the bus with us. Thank you all.
See Anne’s blog : stripeyanne.wordpress.com
Photo – Noel and Anne