Humber and North Yorkshire Cancer Alliance has launched a new content series, in which people who are currently undergoing cancer diagnosis, treatment or care share their thoughts on what it is like to live with the disease.
With little or no editing, it is hoped that these deeply personal, often raw, always authentic, accounts will provide comfort and support to others who have recently been diagnosed with cancer, or are supporting a loved one who has recently received a cancer diagnosis.
If you would like to share your cancer story to help others please get in touch with the Cancer Alliance: [email protected]
I am surrounded at home and work by love and support. But this is my experience, my cancer, my challenge – Sue’s story
Palma was a revelation. A late autumn break. A last grasp at sunshine. It lived up to the hype. The two of us wandered through the historic old town, in and out of the dark shadows and into the dazzling sun. Squeezing the last drop from our summer wardrobes, we soaked up its atmosphere.
We spent our days between stops for café con leche, lunch, or pre dinner cocktails, people watching, ‘spoilt for choice’ fashion shopping, and even gazing aimlessly at the hundreds of fancy yachts in the marina. It was bliss.
We spoke of our plans, me stepping down from work at Christmas, taking time to enjoy life, maybe travel a bit more. Possibly, if really desperate, taking a new NHS role somewhere.
An unwelcome, welcome home present
Refreshed and renewed, we came home. It was lovely to see the dogs again. A letter was waiting; one with an NHS logo on the envelope. Assuming it was about my forthcoming pension, I opened it. It was for an appointment at the Magnolia Centre at York Hospital; breast screening services. It was a follow-up from a forgotten pre-holiday routine mammogram. “Nothing to worry about”, I said. “Oh s***”, I thought.
Ten years ago, I’d had a similar letter, and it turned out I had cancer. A small tumour, left side, that I found on self-examination. The size of an olive. Swiftly removed courtesy of surgeons at Harrogate and District NHS Foundation Trust and then further zapping by the radiotherapy team at the Bexley Wing in Leeds. Ten years. Was my number up now?
Anyway, onwards and upwards. The following Monday was a glorious autumn day. Golden leaves wafted and tumbled down beautifully from the trees near York station. They laid a crunchy coppery pathway along the historic pavements on my walk to the hospital.
It’s probably nothing, but best to check
My nerves were jangling, my thoughts fractured and messy, but my steps were counted and confident. Only my husband knew I was there and why. Telling myself over and over, “it’s probably nothing”. The mammogram was done in one of those car park-based vehicles; always a bit Heath Robinson. Best to check.
Within minutes of arriving, I was taken to a clinical room where a friendly radiologist told me she was going to do a couple of biopsies on my left breast. Something uncertain on the old scar from the lumpectomy. Probably scar tissue, but best to check.
Within the blink of an eye I was back outside, all done, whizzed through with calm efficiency and returned to the low autumn sun as I meandered back to the station. Present, but absent, as my thoughts continued to zoom without direction zipping across possible outcomes, all of them bad. The little voice saying “it’s probably nothing” was silenced. They would call me in a week.
That week I veered from deciding not to tell anyone of the inner turmoil I was experiencing, to thinking that maybe I should tell one or two people. Those who need to plan, and who don’t do well with surprises. Now, I can’t even remember what I did. That week was just a mess of indecision, fear and doubt. It might be nothing of course, but deep down, deep down, in those pitch black 3am moments of doom, I imagined I could hear a bell tolling.
The news I had been dreading
The nurse rang the following Tuesday at 8.30am. What a job she had, giving people emotionally laden news, good or bad, one call after the other. I felt for her. My turn. You only hear the first bit of what they tell you. And it was this; the biopsy found not scar tissue, but a tumour, about 2cm. It was cancer. Probably a new primary.
“Did I want to be treated at York, Northallerton or Harrogate?”. Nowhere wasn’t an option. Given my history, I knew I would need a mastectomy at least. Ten years earlier, the surgeon at Harrogate had been excellent, accessible, professional and kind. I asked if he, Mr A, was still in post. He was. “Harrogate, then please. Mr A.” She advised I would hear from them over the next week for an initial surgical appointment.
I remember sitting in our living room, rehabilitated from its pandemic status as ‘Office No 1’, trying to take the news in. I felt numb. I’d have to tell P (husband), family, friends, colleagues at work.
Staggering upstairs, feeling this was a bad dream, happening to someone else, I sat with him and said it out loud. It felt like only half a tale – the bad half. Here was the problem, now confirmed, but with no solution, no plan, no glimpse of hope, not yet anyway. I was not on the pathway. The two of us, so usually in control of our lives, normally calmly planning the way ahead, just held each other, lost like orphans in a killer storm. What now?
God love the NHS, something I would be saying with increasing regularity over the coming weeks. Mr A’s secretary rang me later that morning. “Could I come to see him the next day?”. Of course, I’d be there. This efficiency fired me up to take to the phones and tell the people I love my news.
In many ways, this is the worst part of the experience. You want to protect those you love, not rock their world on its axis. But this is what you have to do. It sucks. Each time, you revisit the emotional intensity of saying it out loud. Each time, the reality bites hard, but the telling and re-telling doesn’t get any easier.
However much cancer treatments have improved in recent times, and they have, it’s a word we all dread. Its association with pain, brutal treatment, lengthy periods of incapacity and early death, sit heavy in the box we all carry marked ‘darkest fears’. The shared tears of injustice, of empathy, of sorrow, of fear have to be shed, heard, comforted, mopped up each time.
Mentioning the C-word
The framing of the news altered slightly for each person, trying to anticipate and manage their need to know, their level of understanding, and trying to reassure where possible. Then, broken, you are open and vulnerable to their kindness, their expressions of love, hope, friendship, their ‘prayers’, urging you to stay positive and optimistic. Their words of love envelope and overwhelm you.
Whilst telling people is one of the hardest parts of a cancer diagnosis, it is also the start of a very different relationship with people closest to you.
We can go through friendships, family relationships, marriages even, taking each other for granted; never saying how we really feel. Then the wrecking ball of cancer comes swinging in, potentially demolishing everything you hold dear, and it’s now or never. You tell and show people you love them, and they do the same for you. This raw vulnerability forces an intensity of love that you may otherwise go through life never experiencing. So there’s one positive from all this horror.
It can only be described as experiencing a warm torrent of love where waves come again and again, whooshing you off your feet, forcing you into their arms, to have to trust them. It is especially powerful when it comes from those you least expect.
Whether through words, cards, flowers, gifts, texts, emails, or calls, this love knocks you over, but then catches you as you fall. Sometimes it leaves you gasping, craving the dry, undemanding normality that went before. But another time, the unexpected kind word can act like a warm tight cuddle, comforting you, and like a parents’ love, kissing it better, even for a moment, the pain and fear vanish, and you have peace.
I can do this. We can do this.
And so, I found myself on a pathway. A breast cancer pathway. Mr A was confident it could be removed, there would also be a check for any spread to lymph nodes and beyond.
A ‘skin sparing’ mastectomy and reconstruction was planned. Histology would tell us about any further spread, or more positively, news about its entire removal. That would also determine whether chemotherapy would be required. Dates were discussed, the future three months in the first instance laid out in front of me. Pre-op assessments, investigations, results, surgery, post-operative review and more results. I was to become very familiar with the hospital car park and WRVS café over the coming months.
This is the pathway. No hesitation, repetition or deviation. A straight route from Chair to patient; from woman in charge, to one utterly dependent on the skills of others; from active to passive; from physical symmetry to an unknown physical appearance; from disease to health; and from fear to hope.
Straight on, keep moving. Surgery, tests, medication, repeat.
Walking outside in the packed chaos of the hospital car park, I feel shell shocked. A week ago life was normal. I had plans and was in control. Now I have to be a patient and learn my place in the hierarchy. I will finish as Chair in mid-November. My surgery will be the very next day.
I have to process all this. I need to trust people who are strangers today, but life-savers tomorrow. I am surrounded at home and work by love and support. But this is my experience, my cancer, my challenge.
I feel loved. I feel blessed. There are good people here with skills who can help me face this and get to the other side.
I can do this. We can do this.
This is the new pathway and I am on it.
Sue Proctor, former Chair, Leeds and York Partnership NHS Foundation Trust