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 Hope had long been replaced by acceptance, and a real sense of peace (largely due to my faith).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




Saturday, 1 July 2017

The return of the waffle

As I sit in the sunshine with my feet dangling in the pool, I could not be more relaxed. Rewind to just a week ago and the picture was completely different. (Only) two years ago, I was preparing for a pitch I was going to be delivering the following morning, and presented it to some students who were with us on work experience. As documented in an earlier blog, my words became jumbled and I started to experience what can only be described as extremely odd visual disturbances.

I had the sensation of honey pouring from my eyes and a golden waffle floating just within my line of sight. Having been a long-term migraine sufferer, this wasn't cause for concern and I completed my day and drove home. It was only at Dean's insistence that we went to the out-of-hours GP where I was referred as a matter of urgency to A&E, and after the discovery of a sizeable malignant tumour, the rest as they say, is (uncomfortable) history.

So, fast forward to last week and after a sustained period of feeling off and headachy, I tried to rest. Then, BAM! There it was, that ominous golden waffle. A harbinger of impending waffly doom. As I always endeavour to practice what I preach, I knew that I shouldn't ignore it. Cue another trip to the Emergency GP (who was, as previously) extremely thorough and we hot-footed it to A&E on her instruction.

Arriving at midnight we were advised that there was an eight hour wait. I half slept, sitting bolt upright on seats not intended for that purpose, and Dean activated the 'prayer chain' at my church, who sprang into action. I stayed calm, although deeply worried about telling my Dad. Having lost my sister and in the last twelve months, my Mum, this was terrifying for him.

A CT scan, an MRI (I was scheduled for one in six weeks anyway) and a quick chat between the A&E doctor and my (brilliant) neuro-surgeon and the results were out. NO CHANGE! The cloud was lifted and I felt a flood of emotion; relief, renewed hope and an overwhelming sense of gratitude to God.

I am conscious that for many cancer sufferers, I am in a completely enviable position, and I feel for all of them as I write. However, it is imperative to be conscious of bodily changes. You might feel like the girl who cried wolf, but the wolverine threat is ever-present for the cancer sufferer (or survivor in remission). Don't ignore its call.

Amanda


Disclaimer: Not the actual waffle

Saturday, 24 June 2017

Indignity bingo

Let's make no bones about it. Cancer is undignified. But can it strip us of our humour, our spirit and our self-respect? Absolutely not. So to have a laugh at cancer's expense, get out your bingo dabber, ask for complete silence in the house and join me in a game of 'Indignity Bingo'...

Eyes down. (Bingo caller voice mandatory).

For a line...
Loss of self esteem, SEVENTEEN
Unlucky for all, THIRTEEN
Head in the loo, TWENTY TWO
Endless fatigue, SEVENTY THREE
No pelvic floor, TWENTY FOUR
Sickety sick, SIXTY SIX

For two lines...
Confidence gone, number ONE
Two thin ladies, EIGHTY EIGHT
Wobbly legs ELEVEN *cue whistles*
Oncologist's orders, number NINE
Unexplained aches, SEVENTY EIGHT
Bloated face, NUMBER EIGHT

And for the full house...
Everything's sore, FORTY FOUR
Gaining weight, THIRTY EIGHT
Loss of self, number TWELVE
Just cannot sleep, TWENTY THREE
Staying alive (barely) NINETY FIVE
Can't take any more SEVENTY FOUR
Bald as a coot, SEVENTY TWO
Hickman line, THIRTY NINE
In Casualty, NUMBER THREE
Can't leave the..... HOUSE!

This game is dedicated to all those who have faced all of cancer's myriad challenges with dignity. I am in awe of you all.

Amanda 









Thursday, 15 June 2017

Spot the difference

Today I went to our local hospice to visit an amazing woman from my church. She is facing cancer for the second time and is accessing their out-patient support services. They do a wonderful job in providing opportunities for cancer sufferers to spend time together and enjoy a weekly meal. They also provide counselling services and even foot massages, both of which I benefited from when I was terminally ill.

Whilst I was waiting in reception, I mentioned to the receptionist that I had featured in a TV commercial which you can watch here and brochure for the hospice and asked if there were still any copies lying around. Once prompted, remarkably, she remembered me and my hideous crocheted hat and enormous Cushing's Syndrome face.

She then called up to the publicity team to see if there were any copies of the marketing materials that featured my infamous massive head. A few minutes later, a young guy came in with two A4 sized close-ups of my face. Embarrassed, he glanced at me and apologised that he had brought a photo of the wrong person. The receptionist confirmed that it was me and we all marvelled at how much I had changed. My church friend and I guffawed for a short while as we contemplated the photos, bringing levity to an otherwise emotionally charged situation.

We marvelled at how lucky we both were, and that despite experiencing pain and loss, faith and hope prevailed. As Christians, we were united in the knowledge that God loved us both and that we had a higher purpose.

I'm going to end this post with a challenge. Spot the difference between these seemingly identical photos:

 




Tuesday, 6 June 2017

Life with cancer is still life

I had just composed myself after the 'One Love Manchester' concert where Ariana Grande (who I had never heard of before) comforted an emotional young member of the Parrs Wood High School choir. Then the latest ad from Macmillan Cancer Support sent me back into an emotional whirl.

Cancer advertising is really tricky to pull off. It's a perilous pursuit where the agency has to reflect the realities of cancer without causing alarm to the uninitiated. It's about being true to the experience of those with cancer, avoiding clichés and trite positivity without scaring the families who are watching their loved one suffer. In my view, Macmillan Cancer Support treads this delicate line beautifully.

For those of you who haven't seen the ad, it starts with a Dad reading his young daughter a bedtime story. Then, the scene cuts to a montage of the biting reality of cancer treatment - hour upon hour in a chemo ward with a variety of poisons being pumped into your veins, violent vomiting, constant worrying, tears and even despair. It's pretty tough going, even for people like myself who are on the other side of treatment and recovery. The line (cue lump in the throat) is: 'A Dad with cancer is still a Dad' supported by the strapline: 'Life with cancer is still life. We'll help you live it.' This is a powerful insight and strikingly expressed. Bravo Macmillan, you got this just right.

I have some experience of Macmillan. They produce a range of books and leaflets that are on display in the Cancer Centre, and I've read each one, cover to cover, whilst waiting to be seen by my oncologist. Tonally they're warm and engaging, and they're really useful, providing advice on everything from dealing with work and money through to coping with the changing dynamic of family relationships. They even supply a simple recipe book to help cancer sufferers to eat well according to their needs - building strength, losing weight, gaining weight and maintaining a healthy lifestyle. They also offer the support of cancer nurses and counselling services.

Macmillan Cancer Support, an insightful and compelling campaign and a helpful service. Thank you.

Amanda




Friday, 26 May 2017

Mind well and truly blown

Last night Dean and I watched an incredible BBC documentary called 'A Time To Live'. It was quite simply mind-blowing. Never have I felt such a sense of kinship and emotional engagement with twelve complete strangers.

I was moved to tears (trying to be stoic but failing miserably) as my cancer contemporaries shared their poignant, sometimes heart-wrenching, largely uplifting stories. My heart flipped with fear as I recalled a latent memory of my abhorrent but effective chemo, awakened by a young woman telling her own story of its impact on her life. I wept with empathy as an older gentleman talked about his malignant brain cancer and how it would soon claim his life (there but for the grace of God I felt). I was choked when a delightful woman spoke of memorising every aspect of her beloved husband's face, and I had a lump in my throat as a woman my age explained why she had sent her son to live with his aunt to protect him from her death and introduce him to a new life, sacrificing the opportunity to spend her precious last months with him.

But the documentary was billed as being about living not dying. And what was so insightful for me was the way that this was borne out in the re-invigorated lifestyles of those with limited time. One of the show's protagonists was inspired to run marathons, another learned to paint. Most felt positive and grateful for the time they had left.

Although I have been enormously blessed with God's healing and am no longer 'terminal', I still felt incredibly connected to their stories. Being given a terminal diagnosis is literally life-changing. I hosted a 'pre-funeral funeral' for friends, family, colleagues, clients and I was blown away by people's love and kindness. It was an emotional experience but I loved it. It was a celebration (albeit an odd one) where I was reminded that love brings us together when the going gets tough.

The lesson in all of this is that one of the many positives of facing death is the opportunity to embrace life. Tear away the daily minutiae and what's left is the good stuff. The brilliant stuff. Faith. Love. Joy. Freedom. The stuff that you don't really see when you're in full-on work mode. The stuff that dying people will cherish until their last breath.

In the documentary, the same themes kept coming up. Better a short but happy life. Keep laughing. Do what you've always wanted to do. Grasp the life you always wanted. Keep looking. Really looking. Savour every moment.

Somehow a terminal diagnosis makes everything more rich and colourful. More intense and powerful. More peaceful.

So if you don't have one, take a lesson from those who do. Don't wait for a terminal diagnosis or life-threatening event to be happy. It may be a cliché but in this case it's true. There's no better time to live.

Amanda

Not me obviously


Friday, 19 May 2017

Pink sister star

I may have mentioned before that Amanda and I attend a local breast cancer support group called 'The Pink Sisters' and it's the only support group of this nature in our area (Stoke-on-Trent).
https://www.facebook.com/pinksistersstaffs/

The support group started off with a handful of ladies and now almost two years later, this small group has expanded and there are now probably 50+ female members. They don't all go to every meeting, but most meetings have at least 25 ladies in attendance and these take place on the second Monday of every month.


One of the women who attends most of the meetings is a very young and beautiful girl who last night, a large group of the Pink Sisters had the pleasure of supporting in her quest to become Miss Staffordshire.


Madison's story so far (by Jackie, the support group leader):

Madison was diagnosed with Stage 3 Breast Cancer at the extremely young age of 21 and has undergone a mastectomy (still waiting for reconstruction), chemo and specialised radiotherapy as unfortunately the cancer had travelled to her chest wall and now just two years later, was in the finals of Miss Staffordshire 2017.
Madison is beautiful both inside and out and is a great ambassador for anyone who has had cancer in showing that we can go on with our lives. She is always a great listener, fully supportive to all the members of the group, never ever moans or asks 'why me?'.
Madison is quite simply, amazing. To be diagnosed with breast cancer or any other cancer at any age is devastating but to receive this news at the age of 21 is just tragic and as a parent of two 'children' that are older than Madison, I really can't imagine how her family felt. 
Madison was at the time of her life where she was going out and enjoying herself and basically doing what a 21 year old should be doing. 
Last night Madison looked absolutely beautiful and it was a pleasure to have been there as part of a group to support her.
Madison won Miss Public Vote, Miss Fitness, Miss Inspiration 2017 and was the first runner up. 

Amanda and I have both been called inspirational, brave and strong over the last 3 years but to all of us who know Madison, she truly is an inspiration and has shown the world that cancer has not defined her. 



Debbie