Friday, 15 September 2017

The best letter I ever received

This morning I opened the best letter that I have ever received. (It's right up there with the letter telling me that I had got into Oxford and the email from the Nigerian billionaire who told me I had inherited millions of pounds from a distant relative and all I had to do was send him my bank details).

So, the amazing letter was from my oncologist after our consultation a month ago. Here are the highlights (and brace yourself...there are LOTS!).

Content: Oncology department; Capital letter overload: All my own.

Brain
"The CT showed NO evidence of recurrence or new metastases" (cancer spread)
"The MRI showed NO CHANGES AT ALL in the area where she had the metastases"
"A previously seen mastoid effusion had resolved"
"Small areas of high signal intensity...is NOT suggestive of a tumour"

Breast
"No lymphadenopathy and no breast lumps"
"This is an excellent result from the surgery and radiotherapy"

Overall
"She is in REMISSION...this means that there is NO detectable breast cancer" (yayyyy!)
"Even though she had a metastasis there will come a point when we would CONSIDER HER CURED if she did not develop a recurrence" (can't read this without crying)
"There is nothing magical about five years. It is HIGHLY UNUSUAL for a Triple Negative Breast Cancer to show itself beyond 8 years." (so, not out of the woods yet, but I can see sunlight through the trees)
"Most recurrences show themselves in 2 - 3 years from diagnosis" (29th November 2013)
"All of this makes us OPTIMISTIC both overall and from the point of view of the cerebral metastasis"

So, this is incredible and miraculous news. I am immeasurably grateful to my surgeon(s), my oncologist, the NHS, my church and my amazing husband, Dad, friends and family. Above all, I am overawed and deliriously thankful for God's healing after my diagnosis of 'months not years' to live. (October 2015)

Whilst I am absolutely thrilled, I am also conscious of those who are still suffering from cancer and those whose time is limited. My heart goes out to them, and I am embarrassed to share this news when people close to me are still suffering and others too have lost their lives to this dreadful disease. My joy is therefore tempered with a great deal of sadness. But I hope this is a story of faith and hope to those who are just starting on their cancer journey.

Amanda



Thursday, 7 September 2017

Body shock

Leafing through a pile of well-known women's magazines, my attention was drawn to a headline about an international model's 'body insecurities'. Irked, I flicked through to the article to check that she didn't have a medical condition that meant that she saw herself differently to the way that others do (body dysmorphic disorder and the like), but it was plain old lack of body confidence. Clearly, the modelling industry can be pretty cut-throat (if Britain's Next Top Model is to be believed) but in my opinion, body criticism is kind of part of the job spec.

The reason for my ire was that I, and tens of thousands of other people with, or recovering from, cancer, have more serious body insecurities to overcome. When I was bald, bloated with steroids and had a bad case of 'Cushings Syndrome' (euphemistically called 'Pillow Face'), I experienced some serious body blows.

One of my friend's children cowered with fear when he was confronted by me and my massive head, another told me that I looked like her Grandma and when I built up the strength to go to a friend's birthday meal, a former colleague didn't recognise me at all.

Other excruciating memories include talking to an ex-boyfriend who thought I must be insane when I reminded him that we used to date, and meeting with an old school friend who after speaking to me, said to his partner, "NO way! That wasn't Amanda...was it??"

Even complete strangers would do that awkward double take before averting their eyes, and I always welcomed the people who didn't pussy-foot round me, for example, the woman in a local shop who said, "have you got cancer, duck?" (a local colloquialism, not a toilet cleaning aid).

Now of course nobody means to offend you, and it's always an innocent mistake, but it can make you feel pretty awful. Now I'm past the balloon head phase and have normal hair, I don't stand out from the crowd. But whenever I see someone with a cancer head-covering or a bald head, I look them straight in the eye and give them a knowing smile. A smile that connects us in the cancer community and shows that I empathise and wish them well.

Why not do it too?

Amanda

Me on a good day




Thursday, 24 August 2017

There's something about Kevin

When I got my first job in advertising, I was absolutely thrilled. I worked at a fantastic agency, and developed friendships that endure to this day. What made it particularly wonderful, was that I worked with the loveliest people. One of whom, was Kev. One half of a creative team, Kev was a gifted, witty and genuine man; a superb writer and all-round good guy. He was absolutely dedicated to his family, and he and his creative partner always spoke in such glowing terms about their wives, and in Kev's case, his girls, that it provided me with a blueprint for my future relationships. He was always the last on the dancefloor at awards events and often had to face the wrath of waiting taxi drivers. Also, in the office he used to sing and whistle infectious tunes that you couldn't shake off all day.

So why am I telling you all this?

Well, Kev had cancer, a cancer that he eventually died of. When we worked together first time round, someone had mentioned that he had cancer, and I noticed that he had made modifications to his office chair, as I believe he suffered from back pain. Although I had an Uncle that died of cancer when I was young, and a cousin who died from cancer before I was born, I had limited experience of what a devastating effect cancer can have. When we worked together a second time, I was slightly more aware that Kev had to work from home sometimes after radiotherapy treatments, but I only found out afterwards that he had been given a projection about how long he had to live. Amazingly, with all this going on, he always maintained an upbeat mood and never once complained about his condition.

When Kev died, I wanted to do something in his memory. I applied for a voluntary role at my local Early Detection of Cancer service. My role was (ironically as it happens) to go out into the community and talk to people about the three most common cancers (breast, brain and bowel) and advise them to seek help if they were exhibiting any symptoms.

I truly believe that this helped to save my life. The training included a video of an early stage cancer (which looked like a small white pea), and then an advanced cancer that had wrapped itself around the entire bowel, making it impossible to operate on. I will never forget that image, and made a firm note to self that if I ever had any suspicious symptoms that I would act quickly.

Well, as regular readers of this blog know, I did have suspicious symptoms, I did act quickly and I'm still here to tell the tale. I told Kev's wife that he saved my life. He could save yours too. So don't ignore the signs, listen to your body and go straight to the GP if you identify any changes (even subtle ones). It's part of his legacy and I hope, part of mine.

Amanda

Image result for head in the sand

Sunday, 20 August 2017

When I was a kid...

...the ultimate career aspiration was to be a brain surgeon. I had toyed briefly with the idea of becoming Prime Minister (well in the early '80s, that was already proven to be a real option for a young, ambitious girl). As I grew up though, I realised a pre-requisite of the job was at least a vague awareness of, or interest in, politics, and I had neither. I also had an absolute love and passion for words; that's why it's so incredible to have a career in which writing plays a critical part.

I have many, many heroines: strong, intelligent women who have excelled academically, professionally and personally, all in their own unique way. Many of whom I am fortunate enough to call friends.

However, one of my recent heroines is a woman who I have trusted with the one thing I have always treasured and valued above all others - my brain.

She is a neuro-surgeon at my local hospital and conducted both my brain surgeries.

Only after I woke up after my second operation (to remove a large, malignant tumour in my brain, the second that Triple Negative breast cancer had created in a matter of a few weeks) did I realise the enormity of what she had done for me. My life, my brain and my future had been quite literally, in her hands.

Using her incredible skills, not once but twice, was a momentous and (fortunately not) mind-blowing act. Beforehand, she had confidently told me that however many times the brain tumour came back (and the expectation was that it would), she would keep on removing it. And I trusted her implicitly, although after the second surgery, I hope, in the best way possible, that I never have to benefit from her brilliance again. She also said to me that we were 'in this together', and that it would be up to me to stay fit, take care of myself and follow her instructions on my recovery. I liked this sentiment, although of the two of us, mine was effectively a bit-part in this mammoth production.

So it's been two years since she opened my brain for the second time, she, like many other incredible women has made an enormous, indelible imprint on my life and 'grateful' doesn't really come close to how I feel about this phenomenal woman. I'd like to blame her for my ineptitude at Scrabble and my complete inability to follow directions, but unfortunately they pre-dated her interventions. Today, two years later, I comb my hair over my scar and marvel that her amazing artistry and God's supervision have given me an incredible gift. Thank you.

Amanda

This CT scan shows the extent of Amanda's cancerous brain tumour when she was hospitalised in May 2015

Sunday, 6 August 2017

Lost and found

WARNING: This post contains several mixed metaphors

Now cancer can be a bit of a thief, stealing from those it affects and leaving a gaping hole in its wake. But as time progresses and a 'new normal' emerges, those losses can be re-interpreted as gains.

LOST
Long blonde hair

FOUND
A contemporary and low maintenance bob

LOST
The stresses and strains of a busy life

FOUND
A new attitude of gratitude and peace

LOST
A scar-free and (mostly) functional body

FOUND
Awe that my body that was able to withstand aggressive treatments

LOST
Twenty years of relentless migraines

FOUND
A clear head (I mean, WOW!), a CLEAR HEAD!!!

LOST
Tunnel vision on completing task after task

FOUND
The joy of seeing the beauty in the everyday things

LOST
A focus on daily irritants

FOUND
The ability to transcend the mundane and celebrate each new day

LOST
Taking life for granted

FOUND
A powerful thrill that despite the odds, you are STILL HERE!

LOST
The expectation of a 'three score and ten' life

FOUND
The realisation that every day is a gift from God

It's easy to get caught up in the sometimes relentless daily grind, but a brush with death can not only sharpen your focus, but also stimulate your senses and open your eyes to what's great about the world. So, today, despite the weather/money worries/relationship issues/a massive 'to do' list/a stressful week ahead*, then open your eyes, and I mean, REALLY open your eyes to what's great about YOUR world. You'll be glad you did.

Amanda

*delete as appropriate




Wednesday, 26 July 2017

Body faming

For those who are unfamiliar with the concept, 'body shaming' is a practice whereby those in the media make comments or judgements about someone's weight or physical features. Now, as someone whose body has had a sound pummelling for three and a half years now, I thought I would give it a little boost. I'm going to call this 'body faming'.

So here are my top ten reasons for putting my beleaguered body into my own personal hall of fame:

1. It was injected with poison for six months and had to go on overdrive, ejecting all sorts of nasties out of my system (albeit in a rather undignified fashion).

2. It was subjected to high energy waves of radiation for three weeks...twice!

3. It helped to fight infection even when my resistance was super low.

4. It made a concerted effort to re-populate my bald head with hair...twice! And it kept me guessing with different textures and colours.

5. It communicated with me using its sophisticated alarm system whenever it felt like there was something I needed to know.

6. It carried on repairing itself even when my brain was operated on and my head sewn back together...you've guessed it...twice!

7. It tolerated all sorts of efforts to undermine its functionality and kept on going.

8. It remained stoic as it was pumped full of steroids, and then quietly built its own strength to counteract this change.

9. It survived multiple scans, X-rays, invasive treatments, injections and surgeries and didn't give up.

10. It wears its scars with pride, as do I.

Today, I am celebrating my body and all its imperfections. It's brave and strong, resilient and determined. It deserves to be celebrated and not in any way shamed. It's a gift from God and its incredible, mind-blowing intricacy has served me well. Your lumps and bumps are irrelevant (but get anything new checked out anyway), it's the steel inside that counts.

Amanda



Thursday, 20 July 2017

Mission Remission Revisited

Over the last three years of writing this blog, Debbie and I have reviewed the analytics (you can take the girl out of advertising, but you can't take advertising out of the girl) and observed some interesting trends. Our posts tend to vary from 400 reads to over 1,000 and my 'letter from me to me' reached 10,500 people via Facebook shares. Usually our posts peak during the first two days, then generate 50 or so views over the next week and then fade away. However, there is one post that remains completely constant at 40+ views. It's Deb's post and is entitled 'Mission: Remission'.

There's something about this post that attracts views (many from around the world), with the implication that remission is a serious goal for many of those who are suffering from cancer. When I was diagnosed as 'terminal' on the 21st October 2015, I could not even imagine something so incredible as 'remission'. It was a glorious, glittering and seemingly completely unattainable vision. Hope had long been replaced by acceptance, and a real sense of peace (largely due to my faith).

Cancer can deliver one blow after the other and your tolerance of bad news tends to increase over time until it becomes an expectation rather than a shock. As documented in this blog, I have been plagued by, well, troubled by, all sorts of ailments - chest pains, colon issues (clearly a euphemism!), brain disturbances, headaches, dizzy spells, nausea, pins and needles and fatigue - to name but a few. But on Monday this week, I met with my incredible oncologist and was told that I was 'doing extremely well' and that I was officially 'in remission'!! (This is news of such magnitude that I deemed it worthy of two exclamation marks)!! He also noted that my case was highly unusual (in my view, a God-sent miracle) and the symptoms were attributable to the after-effects of treatment such as radio-therapy, and some minor infections. I called my contact at our local hospice to share my news and she told me that in their team meetings they call me 'the miracle lady'!

I asked my oncologist about my chances of a recurrence, and enquired about the magic 'five-year' milestone that I was aiming to fly past. However, this is actually only arbitrary and is guided by how cancer statistics are measured and reported. Every case is different, but with Triple Negative cancer which is very aggressive, a lot of recurrences happen in the first few years after diagnosis, and whilst the outlook is good, eight years might be a point at which I can relax a little as the threat is lessened.

He also summed up by saying that I should relax and enjoy life. So under strict Doctor's orders, that is exactly what I will do.

Amanda

Couldn't have put it better myself