To know or not to know, that is the question

So, yesterday I had a hospital appointment with the Professor who conducted my original breast cancer operation in December 2013. At the end of my previous appointment with my oncology Professor (the hospital does roll out the big guns), he had mentioned that the next step would be to understand why I had got cancer in the first place and whether it may be genetic. He also mentioned a trial I had taken part in called 'Impact' (a super blast of radiotherapy to the area where the tumour was) for future review and discussion. I didn't expect it to be a significant appointment, rather just a catch-up on both issues and an examination of his handiwork from five years earlier.

I had an hour-long session with a delightful medical student whilst I awaited the Professor's grand entrance. And then...there I was (alone for the first time at a hospital appointment, normally I would have my trusted back-up team of my Dad and husband) and was expecting a light-hearted discussion about how the trial results would 'impact' on women with breast cancer in the future. I had completely forgotten the conversation with my oncologist about genetics. The Professor arrived with an entourage of the first medical student, a new student and my former Breast Care Nurse.

I had the customary breast review (a thorough investigation from the Professor and a more tentative feel from the two young men, who I think were worried about hurting me!), we all exchanged pleasantries and I awaited a cursory discussion about the trial. Things started well with a positive note from the Professor who said he was delighted to say that sometimes the specialists can be wrong and that he was extremely pleased that I was healthy and on good form. So far, so good.

He then began to explain why he wanted to see me. I expected to discuss the trial, however, the conversation was entirely focused on genetics. My family is no stranger to cancer (and other life-threatening diseases), however, on consulting the cousins on my Mum's side, and my Dad on his side of the family, none of them had been through breast cancer.

The mood in the room darkened and I was completely unprepared for the subsequent discussion. I was vaguely aware of the BRCA gene and that those who carried it had a significantly higher risk of getting breast cancer than those who do not carry the gene. The Professor advised me that I may or may not have the gene and if I wanted to have the test, I would then have to deal with the implications of a positive result. I could be opening myself up to the prospect of surgery, pre-emptive treatments, high insurance premiums and many other issues further down the line.

I have only just celebrated my five year 'cancerversary' and was hoping to have left cancer in the past (concentrating on supporting those for whom cancer is well and truly in the present). So, do I want to open that can of worms? Erm...no. I really don't. This may be a contentious decision and I may live to regret it. I am not Angelina Jolie or Michelle Heaton (although I have been mistaken for the former several times *joke*). They are brave women who made life-changing decisions. I respect them greatly, but I trust that God will keep me safe and that I will not need to go down that road. I am still unsettled, but my heart tells me that this is right for me, right now and so I'll put down my can opener and move on.

Amanda

I'll do what it says on the tin

A date to be thankful for

We all have milestone dates in our lives, dates that come around every year, dates that you either dread or dates that you celebrate. The most common dates are birthdays and these are completely out of our control but you never forget your birthday (even if your husband/wife does).

Anniversaries in their most common form are dates whereby you celebrate a partnership or perhaps on a sadder note, we remember the date of the passing of somebody we love. As we go through life, these type of anniversaries tend to accumulate.

When you are a cancer survivor, you have additional dates etched into your memory, you'll never forget where you were or what you were doing when you heard the words 'you have cancer'.
For me, that date was December 30th 2013. Today I am a 5 year cancer survivor. It was the day that life as I knew it ended and a new life began. From that day on, life would never be the same again whatever the outcome.

The first year after a cancer diagnosis is a brutal year: life changing and body changing surgery, chemo and then recovery followed by years of medication for lots of people. Sometimes I wanted to speed the clock up just to get me through those days. Five years of three monthly check ups, followed by six monthly check ups and then yearly check ups (massive fanfare). I always imagined how I would feel if I were lucky enough to reach the five year benchmark.

In many ways, this date has become the most important milestone and one that only fellow cancer survivors will understand. I have reached the magical five year mark! Most people will equate this to being cured or in complete remission but this of course is not completely true as many breast cancer survivors reach five, ten or even fifteen years only to hear that those pesky malignant cells have been hiding and waiting quietly until you're sipping on another celebratory cancerversary glass of champagne to surprise you with a recurrence.

Although I shall mark my five year cancerversary, I shall still remain cautiously optimistic for fear of jinxing myself. This is all part of my 'new normal' and the reality for many cancer survivors, a mixture of happiness, joy, anxiety and immense gratitude.

We also celebrate other milestones with far more thankfulness than ever before. Never again will I dread a birthday and say the obligatory 'woe is me, can't believe I'll be 50 in March'...Yes, it's another massive milestone that I have (almost) reached and it will be a privilege to be able to celebrate my special birthday as so many people don't get to do that.

What does one do to celebrate a cancerversary? My answer is quite simple, I shall celebrate purely waking up, feeling grateful to be alive and being able to simply enjoy life.

I have a wonderful family, a fabulous and supportive husband, three amazing children, the best circle of friends and since my original diagnosis, I am now the proud grandparent of three beautiful children. What more could I possibly celebrate?

Debbie

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

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

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.

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

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 12^th 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