Whether you have been personally diagnosed or you are supporting a loved one, waiting for and getting results can be difficult. It can be hard to know how you might feel if you receive news you didn’t want or didn’t expect.
You might know Community member and Macmillan volunteer Wee Me from our “Carers only” group or “Glioblastoma multiforme brain tumour” group. You might also know her from all her blogs here on Community News. Wee Me’s husband was diagnosed with a Glioblastoma brain tumour in September 2020. Following on from her blog in March 2022 for Brain Cancer Awareness Month, Wee Me is here today to talk about hearing the news. She shares her experience of going to appointments, looking at scans and hearing her husband’s results.
“Point to the picture of the blue pencil under the red shoe.”
A simple enough instruction, but it was that request from the speech and language therapist on the same day that we got my husband’s stage 4 brain tumour diagnosis that has lived with me since 4 Sept 2020.
I sat there, in silence, willing him to select the correct image from the four in front of him on the page. It was heart breaking to watch him struggle with something so simple. Eventually, he pointed to the right one.
I’m pretty sure I let out an audible sigh of relief.
Less than an hour beforehand, we had met with the neurosurgeon, who had broken the news to us that the mass that the various scans had shown up was most likely a glioblastoma and that it came with a terminal diagnosis. I can recall most of that conversation clearly too. But the image that lives on in my mind is the one of the blue pencil under the red shoe. It was at that moment I realised how serious this was and how broken my husband already was. How he had been coping at work I will never know!
Scary…
Nothing on this earth prepares anyone for a cancer diagnosis. There really are no words to soften it. It’s one of the scariest things you will ever hear. In my husband’s case, I don’t think he initially grasped that a brain tumour was cancer.
As the months and now years (years we didn’t think we’d have after an initial prognosis of 12-15 months) have passed, there have been several key moments where the roll of the dice hasn’t been favourable as we’ve sat and listened to the video call update from the oncologist or read key information in a letter that should have been discussed with us.
"Scan days have always been difficult days."
Scan days have always been difficult days, not helped by the fact we’ve been on a tour of our NHS region with them. The week or two between the scan itself and the oncology video call were/are horrendous as we all dread what the images will reveal.
For almost two years, they revealed no change and that bred a sense of complacency to a degree. “No change. See you in three months” became the mantra.
In my heart, I knew one of these days the news wasn’t going to be good.
How do you mentally prepare to hear that?
That’s a question I’ve pondered for a while, ever since I first thought about writing this blog. After hours of reflection, I reached the conclusion that I don’t think you can.
What I think you develop is an expectation that the news is always going to be bad. That way, if “no change” or with many cancers “signs of improvement” are the outcome then it’s a win. Your instinctive way of coping is to expect the worst then breathe a sigh of relief when that’s not what you hear.
But, what about the occasion when the news isn’t good…
Last October at my husband’s oncology video call, we got the news that there was an area of fresh tumour activity. The MRI had shown a new 10mm growth. My heart sank…but to be honest, I had suspected that there was something going on, based on changes I’d noted in my husband’s behaviour. Subtle changes. The oncologist suggested that a fresh MRI was done in six weeks’ time to give him a defined window that would help determine growth rate etc. He also said that he would meet us, as a family, face to face to go over the results and discuss the way forward.
Move on to the third week in November. Accompanied by our two adult children, my husband and I found ourselves looking at the fresh MRI images in the oncologist’s office. These were the first scan images we had actually seen in over two years. This was the first time we had met the oncologist face to face…sad but true. As he talked us through the images from 1st October, I realised we had been misled to a degree. There were two new active areas not one. I could easily have become angry at this but what would be the point? The more recent images were the important ones and, at the risk of catastrophising, they were scary! Those two new active areas had doubled in size in the six weeks between the scans and had found two smaller friends into the bargain. The original tumour site lurked grey and fuzzy on the screen.
Could the oncologist really have shown us anything worse? Yes!
No, don’t look at the screen in horror here. It could have been worse.
Thinking calmly and logically, we’d already heard the absolute worst news on 4 September 2020 when we were told my husband was dying and that there was nothing that could be done about it. That information, diagnosis and prognosis, had long since been processed and reluctantly accepted.
Looking at these images showing four areas of active tumour growth didn’t change that diagnosis. True, it wasn’t a good news story, but the tiny positive to be taken here was that all four of those tumours were still on the same side of the brain as the original one. It hadn’t jumped sides. A tiny positive thought but a positive all the same.
There is no right or wrong way to deal with medical updates. We are all driven by emotions so there are tears and fears associated with any change and that’s only natural. Acknowledging those and letting the emotions pass through are signs of strength and resilience.
I practice mindfulness when I can and have come to process things by asking myself some simple questions:
There are other questions too but those three cover the basics. If the answer is “no” to any of them then I gracefully accept things as best I can. I’ve discovered over time that so much mental and emotional energy is wasted stressing about things I can’t control. I try to conserve that energy now for the things I can influence or to preserve some inner strength that better supports me to care for my husband and family.
I’ll not lie- my children and I were all pretty emotional when we left the oncologist’s office that November morning. My daughter took my husband round to the clinic to get some bloods done then, leaving him in the crowded waiting room at his insistence, she came to join my son and I in the hospital café. Independent of each other we all had the same first observation of the appointment and each of us in turn voiced it.
“He was taller than I thought he’d be.”
The mind works in mysterious ways to help us cope with less than positive news.
“There is no right or wrong way to deal with medical updates. We are all driven by emotions so there are tears and fears associated with any change and that’s only natural. Acknowledging those and letting the emotions pass through are signs of strength and resilience.”
We’d like to thank Wee Me for sharing her experience with us. If you’re feeling worried about an upcoming appointment, you’re not alone. There’s lots of support here on the Online Community. Everyone can cope with difficult news in their own way. But it can help to know what helps others, and what might help you.
Macmillan has lots of support and guidance around appointments and results. Macmillan has practical tips on talking to healthcare staff to help you with your appointments.
Are you supporting a loved one through cancer? Find support from other members who might really understand how you feel:
Read more from Wee Me:
