Friday, 14 December 2018

WHAT AM I?

I am present in one out of every two people.

I am indiscriminate.

I have been found in dinosaur bones.

I have been identified in Egyptian Mummies.

I am responsible for 160,000 UK deaths per year.

I am rife in animals.

I am the leading cause of death in developed countries.

I am the second leading cause of death in developing countries.

I am savage and underhand.

I make people sick.

I decimate families.

I erode confidence.

I am cruel and insidious.

I take special people away.

I am pervasive.

I am a master of disguise.

I give nothing but take away everything.

WHAT AM I?


Author's note:
I know that this is an uncharacteristically acerbic post, but it is an outlet for me to vent. So, while we are celebrating the birth of our Lord and wonderful Christmas family time, people close to me who I love deeply are facing an imminent death, an impending diagnosis or debilitating treatment. Others will be mourning the loss of loved ones and will have a empty seat at the table.

My heart goes out to them.

Amanda





Sunday, 18 November 2018

Diagnosis: butterflies in tummy area

So, as I am sure is the case for many of my cancer contemporaries, an annual appointment with the oncologist can be an anxiety inducing experience. In my case, even though I have received lots of good news recently, I still can't quite shake off the feeling that the butterflies in my stomach might burst out and land on the oncology Professor's forehead.

My usual modus operandi is to measure the feeling in the room (look for clues e.g. is he smiling? Are the nurses looking at me sympathetically? Is his handshake warm and welcoming?) before sitting down with my entourage (my dream team, wonderful Dad and amazing husband). If all the signs are good and his opening sentence is a positive one, then I am so giddy with relief that I essentially zone out for the remainder of the appointment.

I mitigate this problem by asking my Dad and Dean to make notes so that I can absorb the news when I'm back home.

Incredibly, despite the enormous pressure on the NHS, my oncologist always takes time to write a summary letter of what was discussed. This then gives me the chance to Google any complex terminology and disseminate the information to friends and family (and for this blog obvs.)

So, this one included my initial diagnosis:
"Triple negative ductal carcinoma left breast" is translated by me as "super aggressive cancer that cannot be treated by hormone therapies".

And my secondary diagnosis:
"Metastatic poorly differentiated carcinoma to the brain, had left craniotomy followed by whole brain radiotherapy" translated by me (I can't blame Google) as "OK...this is not looking good."

But that was then and this is now. I home in on the key phrases of the letter: 

"CT and MRI scans of the head showed stable appearance and no new metastases...This is TREMENDOUS news!"

"It is looking OPTIMISTIC that this will have been a solitary metastasis."

"She is doing very well from a point of view of the breast cancer generally. Clinically there is no sign of any recurrence."

And...drum roll..."We are now optimistic of the chances of a CURE!!!!!" *Words: oncology Professor. Punctuation and capitalisation: Author's own.

So, again, it's an amazing miracle at God's hand. According to a butterfly conservation site, butterflies are considered to represent "freedom, beauty and peace". Exactly my aims for the future.

Amanda

Imagine my embarrassment when these flew out



Monday, 5 November 2018

To see a rainbow we must deal with the rain


I'm no meteorologist but if I had known when I celebrated my 40th birthday five years ago what the storms ahead would be, I would have replaced my umbrella with a full-on body suit.

So, the conditions of cancer were stormy (a lumpectomy followed by turbulent vomiting), tempestuous (six sessions of chemo) through to downright savage (whole brain radiotherapy).

The forecast seemed so bleak (my terminal diagnosis in 2015) that it would have been easier to zip up my rain mac and stay indoors.

However, after every rainstorm, something beautiful occurs. A prism of colour that fills the sky. A symbol of hope and the promise of a pot of gold.

This month, I had my annual reviews with my neurosurgery and oncology consultants. My neurosurgeon hugged me and discharged me (WOW!) and the oncologist told me he had only had one patient before me who was diagnosed with Triple Negative Breast Cancer that spread to the brain, in 28 years and that she was still alive and well. He even said that my outlook was sunny (well in more formal language, but that didn't help my weather metaphor) and that now I have the same chance of getting cancer (again) as anyone who has never had cancer (WOW!).

I was often to be seen in this outfit
So after the rain subsided and the clouds dissipated, the rainbow appeared. Being alive and cancer free, able to spend time with my loved ones is a huge pot of gold.

Now I am painfully aware that friends around me are still in the eye of the storm and I pray for them to make it through. But this is a story of hope, and God's love and grace. He has saved me from the hurricane and it's time to rebuild.

Amanda

P.S. Debbie has her oncology review today, so I hope she finds her pot of gold too.


































































































































































































































































































































































Sunday, 9 September 2018

200k wanted

I am not a fan of technology telling me what to do. I have to brace myself for the obstreperous self-service super-market tills. I like to run as many steps as I choose rather than have a nagging automaton on my wrist. And, I prefer to write a blog post when I have something to say. Facebook however, just chastises me until I relent.

So, on viewing the blog after my Dad's heartfelt post last week, Facebook gave me the usual dig in the ribs to write a post. As I logged on, I was surprised and delighted to see that mine and Debbie's blog was heading towards the 200,000 views milestone.

What started off as an informational blog on tips to help sufferers improve their cancer journey, evolved as my journey evolved, from my Triple Negative Breast Cancer diagnosis in November 2013 to 'months not years to live' in October 2015. My blog became a mode of self-expression, a way of communicating my progress with friends far and wide and, I would like to think, a way of showing cancer sufferers that there could be a positive outcome.

My Dad and I had lunch today in the restaurant in which my agency colleagues had organised my 'pre-funeral' funeral. (I had always thought it was a shame that you didn't get to hear what people thought of you when you were alive!). It feels odd and somewhat disingenuous to be eating there three years later with a full head of hair, a normal-sized head and rather thrillingly, an 'in remission' status. It was also a wake-up call (I do tolerate being woken up by a phone) to remind me that life is as precious as a jewel but as delicate as a flower. It's only when something throws your world off balance that you yearn for a humdrum, uneventful life.

So, as the blog hits the 200k visits mark, I will remember that this blog is my narrative (and Debbie's too) and charts a journey of hope, faith, despair, lots of love and a miracle thrown in for good measure.

I'll write soon. Facebook wouldn't allow me to do otherwise.

Amanda



Thursday, 6 September 2018

Fresh beginnings: a post from Amanda's Dad


It seems quite a long time ago that I did a ‘guest blog’ for Amanda and Deb’s Breast Cancer Tips website, so here goes.  I vividly remember meeting Debbie for the first time whilst accompanying Amanda for her chemotherapy session at the Cancer Centre in 2014.  Amanda and Debbie were receiving treatment in chairs next to each other, and I was so encouraged by Debbie’s extraordinary upbeat attitude and infectious personality – I’m so pleased that they’re still friends nearly five years on.  They have such a special relationship tinged with so many emotions.

To be perfectly honest, every day has been a challenge since Amanda’s initial breast cancer diagnosis. Life will never be the same again.  Amanda did a brilliant blog in June about clichés that people use concerning Cancer survivors, and I think that some of these apply to the parents of Cancer survivors as well.  ‘I know how you feel’ is one that really gets to me, because I think that it’s impossible for someone to know how I feel, as they don’t know my history or even remotely understand the way I think.  ‘Think positive’ is another annoying one.  It is difficult to think positive when you’ve been given quite a lot of extreme problems to deal with from a very early age.  Anyway, from my experience, I don’t think that being ‘positive’ can change anything at all. 

On the other hand, it is truly amazing that Amanda is still with us.  On July 12th the neurology team advised that Amanda’s MRI (brain) scan was clear.  I truly never thought that I would ever hear the word ‘remission’.  My mind sometimes goes back to the very dark days of visiting the Hospice, and of collecting a wheelchair. How wonderful that Amanda was called the ‘Miracle Lady’ by her palliative care nurse!! 

I said in my second paragraph that every day is a challenge.  When your daughter has suffered from Cancer, you worry about every ache and pain she has.  The suffering that Amanda has endured has been extreme and heart-breaking for any father to witness.  However, I can now clearly see her getting back to normality, and enjoying the things that many of us take for granted. 

Amanda has received tremendous care from her husband and received fantastic support from her many friends from the many aspects of her life; and I really appreciate that. 

I’ll finish with the cliché ‘Time is a healer’.  As Amanda said in an earlier blog, she still has a massive scar on the back of her head following the removal of two brain tumours, a scar on her breast and one underneath her arm. Plus, she still suffers from the after effects of the aggressive treatment.  However, thanks to God, and Amanda’s truly amazing surgeon and team she is still with us…….

Final cliché: Let every morning be a fresh beginning!!!

Amanda’s Dad


Thursday, 12 July 2018

Amazing News. Amazing Grace.

Well, after ruminating about various complaints for months, bothering the Doctor incessantly and bending the ears of friends and family, I was given my MRI result today (a brain scan for the uninitiated). It was clear!!! (OK, I know that three exclamation marks could be deemed as excessive but it's that kind of news).

I am thrilled and slightly emotional (it was only Monday that my Dad and I went to the bingo in my Mum's memory). Mum died two years ago, and she would have laughed at our complete ineptitude and my Dad's embarrassingly loud phone that went off TWICE. The TV image of the glamorous young women having enormous fun at bingo was, in our case, completely inaccurate, and the clientele were deadly serious septuagenarians who were not impressed by my inability to check multiple cards at once, and my Dad's inability to switch off his phone.

I was also in a sentimental mood, having viewed a video of my Grandparents and Mum from 1992 (kindly shared with us by my lovely cousin), the year my sister died.

All in all, even a YouTube cat video would have sent me over the edge.

So, this news was incredible to receive. Clearly, it's by the grace of God that I am still here, three and a half years after my terminal diagnosis and nearly five years after my initial breast cancer diagnosis. I feel incredibly blessed and I am so, so grateful for the prayers and support I have received.

My friend Pippa made the gift below for me, as it's the name I was given by my palliative care nurse from our local hospice. It's hanging on my bedroom mirror as a reminder of the miracle of being alive and though I am painfully aware that many of my cancer contemporaries are still struggling with the disease, my heart is filled with gratitude.

Amanda


Tuesday, 12 June 2018

A very small thing that's actually a very big thing

When I was ill with cancer, I saw a TV ad from one of the major cancer charities. The ad was celebratory in tone and showed cancer survivors doing things that demonstrated how far they had come since their initial diagnosis. One of the scenes in the ad was where a young woman tied her hair back in a bobble (at 45 am I too old to use the word 'bobble'?). I never expected that I would have hair again, bearing in mind my terminal diagnosis, and when you know that you're dying, you tend to be focused on living day-to-day rather than on a future that you will never see.

So, fast forward to today and I now have hair. That's right. Actual hair. Hair that can, with help from a professional (preferably a hair stylist and not a lawyer) look quite normal. But sometimes (and I am ashamed to admit it after years of yearning for my old hair back) it does get on my nerves and I want to tie it back.

I looked in the mirror and tried holding it back to see if it was possible. It wasn't. Never one to give up though, I researched the topic thoroughly (and by 'thoroughly' I mean I skimmed Google for a couple of minutes for inspiration). After several false starts, and looking through endless My Little Pony illustrations, I happened upon some bobbles for children.

I spent one English pound on a selection of teeny bobbles and after much consternation and frustrated endeavour, I did it! I created a post-cancer pony-tail!

It's (quite literally) a very small thing, but in my mind it's actually a very big thing, and if progress was measured in pony-tails, then it's one tiny step but it means a whole lot.

Amanda

OK, definitely not me but you get the idea
Not me either, sadly