Wednesday, 7 February 2018

Suffrage, suffering and incredible women

So, today we celebrate the fact that it has been 100 years since women were given the right to vote. Our debt to them can never be paid. As this is a cancer blog, I thought I would take this opportunity to look back on the many women who have played a critical part in my cancer journey.


My breast cancer nurse
As part of the team who managed my first cancer, Triple Negative Breast Cancer, I was supported by a wonderful nurse who answered all my questions and responded quickly to any concerns or questions I had (and I had loads).

My neurosurgeon
A brilliant and highly skilled surgeon to whom I owe so much. I trusted this woman with my most valuable asset, my brain. She conducted not one, but two, life saving surgeries on my large malignant tumours. Her team are amazing too.

My radiotherapy advanced nurse practitioner
During my second burst of radiotherapy (Whole Brain Radiotherapy), I was so battered by this horrific treatment that I was literally brought to my knees. The head of the radiology team was a smart cookie and identified that my response to treatment was cause for concern. She got me straight into a bed in the Cancer Centre where I suffered two seizures. If this had been at home, there may have been a different outcome.

My GP
Another intelligent and intuitive woman, my GP was proactive and responsive in referring me for treatment when needed.

My palliative care practitioner
After my prognosis of 'months not years' in October 2015, I was assigned a brilliant woman to help me to navigate the various challenges of being terminally ill; sign-posting me to legal, financial and emotional support (and providing another wonderful woman who gave me weekly foot massages!)

My Mum
My enormously clever and caring Mum, who despite the horror of losing one daughter to Meningitis and two brothers to cancer, held it together and loved me throughout. It is heart-breaking to think that she never got to know that I would be in remission and still going strong (by the Grace of God).

My incredible friends
The precious and invaluable support from my friends was second to none. From my lovely church friend, an elderly former theatre nurse, to my indefatigable friends who rallied me round, bought thoughtful gifts, travelled across the country and from around the world to be there for me, supported causes that were meaningful to me and all those who provided kind messages of support on social media. I will never, ever forget that support.

My fellow cancer sufferers
It's sometimes (understandably) difficult for those without cancer to understand its rapacious impact on sufferers' lives. My fellow sufferers, many of whom have died and none of whom have escaped without physical and emotional scars, were, and continue to be, an amazing and relentless source of support and comfort.

So, today, as I celebrate the enormous sacrifices that women have made to gain us the vote, I also honour those women who have stood shoulder to shoulder with me, or brought their expertise to help in my personal struggle. Thank you all.

Amanda



Saturday, 30 December 2017

My soundtrack to cancer

I'm not a particularly musical person. My husband Dean thinks my musical tastes are appalling, and my Spotify playlists are at best, pretty ropey. However, during my cancer 'journey' there were many songs that summed up my state of mind, the emotional highs and lows and the transition from loss to hope.

This is my soundtrack to cancer:

You're All I Need To Get By - Aretha Franklin
This was played at our wedding, and is dedicated to Dean. Clearly Dean wasn't all I needed to get by (chemo, radiotherapy, whole brain radiotherapy and three surgeries were pretty pivotal), but he has been absolutely phenomenal throughout.

You're My Best Friend - Queen
I dedicate this to my unfailing supporter, best friend, ally, and defender, my Dad. Present at every appointment and every hospital admission, my Dad stayed strong even though his remaining daughter was looking like she may not make it. There are no words to describe how wonderful this man is. 

(Something Inside) So Strong - Labi Siffre
This disease with its partner in crime, migraine, did test my physical and mental strength. But, I'm still here...

No Surprises - Radiohead
Cancer delivered a fair number of punches and blows, a terminal diagnosis having me on the ropes (to over-use a boxing analogy). After repeated bad news, I just prayed for no surprises. 

Underdog (Save Me) - Turin Brakes
I knew I was spiritually saved, but there were many moments when I wanted to be saved from the grim realities of cancer.

Beat It - Michael Jackson
No-one 'beats' cancer although some are fortunate enough to keep it in abeyance. You just take arms against it with any tools you have at your disposal. Mine were friendship, love, prayer, faith and hope.

Faith - George Michael
Without it, cancer can seem insurmountable. For me, faith underpinned my journey.

Bridge Over Troubled Water - Simon & Garfunkel
There have been some very troubled waters in my life to date, but I have been blessed with the sturdiest of bridges that even Isambard Kingdom Brunel would have been proud of.

Amazing Grace - John Newton
Such a beautiful hymn. 'Through many dangers, toils and snares, I have already come. 'Tis grace that brought me safe thus far and grace will lead me home.' These lyrics really resonated with me and still do. 

Can I Kick It? - A Tribe Called Quest
Well it was kicked, but mine was only a bit part whilst the key players (brain surgeons, oncologists and specialists) took centre stage.

Harder Than You Think - Public Enemy
Cancer treatment is freakishly hard, mentally and physically. However, the more it throws at you, the more you build up your inner strength (whilst your outer strength is that of a new-born chick).

With a Little Help from My Friends - Joe Cocker
As emotionally sung by Lady Kate at my 'pre-funeral funeral' (an unusual get-together of 200 friends and family to say my goodbyes), this absolutely cemented what I already knew. My friends are incredible.

BONUS TRACKS

Getting Better - The Beatles
Just when I was completely at peace with my lot, some green shoots appeared. Instead of the imminent death we had all prepared for, there was a joyous yet tentative period of improvement. Could this really be happening?

Feeling Good - Muse
What a turnaround! I was not only feeling well. I was feeling good.

One Day Like This - Elbow 
Despite numerous hiccups and false alarms, the unthinkable happened! Expecting the usual bad news, at an appointment to ascertain the results of a worrying thorax scan, my oncologist explained away the non-cancer related findings and unequivocally pronounced that I was in remission. Wow! You don't get many days like that. 

Jump Around - House of Pain
Cue, a blast of my favourite track, Jump Around. This mind-blowing miracle led to a celebration of life, God's grace, a good-bye to pain and a tentative step towards a new life.

Hallelujah - Alexandra Burke
God is amazing. Fact.

Go Where You Wanna Go - The Mamas & The Papas
Woo hoo! My driving licence was returned two years after my seizure. A huge step for me and a huge relief to everyone who had been patiently driving me around.

Heroes - David Bowie
Finally, this song is for all those who are going through cancer. To the survivors. To those who have lost their lives. To those who have lost a loved one. To everyone in my personal journey. You are heroes to me.

If you want to listen to this eclectic (or more appropriately) eccentric Spotify playlist, you can find it below.

Thursday, 28 December 2017

A year of ups and downs

2017 has been a year of ups and downs. On the up side I have been working (albeit from home) and loving what I do. I have built up my physical fitness by 'running' three or four times a week (still facing the embarrassing concept of being over-taken by septuagenarian walkers). I have had some incredible breaks in Spain and recently got my driving licence back (for one year). My driving, like my running, has been cautious and slow, but it's happening. My hair has grown back so the extensions were no longer needed, and has been cultivated by Sarah at Egotrip into a blonde bob. My beach-ball head has deflated sufficiently to make me recognisable as a human-being and apart from random post-cancer treats (shooting pains and the like) and periodic health scares to keep me on my toes, I am pretty much on the road to recovery.

This is an INCREDIBLE result, bearing in mind I was facing the prospect of my last few months on this glorious planet only two years ago. And, this is due to the almighty grace of God, the skills of my gifted oncologist and brain surgeon, the outstanding support of my awesome Dad, the patience and love of my wonderful husband, the mind-blowing backing of my friends and family, the understanding of my colleagues and the support offered by my Church, St. Lawrence's.

On the down side, I have recently lost a precious friend to this horrible disease, a partner in facing cancer with all its indignities and challenges. Another friend died from cancer in the same week, a supremely intelligent and talented man from church with an Oxford Doctorate and a complex mind. Others are still facing the disease, in and out of various treatment phases, but united in hope that they will soon be in remission and even cured. Some are in remission, but still struggle to come to terms with the impact that cancer has had on their lives, and the lives of those close to them.

So, as the year draws to a close, I pray for peace, for healing and for hope for my fellow cancer sufferers, survivors and supporters. I pray for the families of those who have lost friends to this abhorrent disease and those who are adjusting to life without their partners and loved ones.

I am dreaming of an uneventful and brilliantly ordinary 2018 and I'm ecstatically grateful to still be here.

Amanda



Wednesday, 6 December 2017

A tale of two titans

Yesterday a couple of friends shared a link with me about a new injection for migraine (you can read more at http://www.bbc.co.uk/news/health-42154668). Now, everyone who knows me is aware that I have suffered from debilitating migraines since I was 21. I was aware of migraines from my teens. My Dad suffered terribly from them, and I remember him being violently sick, collapsing with pain and even crying in agony. It was horrific to hear, and I couldn't imagine how bad it must have been to bring such a brave man to his knees.

After my finals at Oxford, I was having a super long lie-in (remember those?) until I was woken up with an all-encompassing, vicious and searing pain. I couldn't move from my bed and (rather melodramatically) believed that I had developed a huge brain tumour (strangely prophetic now I think of it) and that it was going to kill me. It was well before the days of mobile phones, so I was trapped in agony until it finally subsided.

These episodes continued for over twenty years, and I battled for a normal life, investing thousands of pounds in treatments whilst my migraines seemed to be 100% resistant to anything I tried.

So, when I was diagnosed with Triple Negative Breast Cancer in November 2013, I had another titan to contend with.

Far from receding politely into the background to let Cancer take over, Migraine decided to join forces and compound its endeavour to grind me down. After my first chemo, I had a hum-dinger of a migraine, triggered by one of the concoction of drugs administered via comically large syringes. Despite removing the offender from the next dose, my migraines raged on, and with a plethora of nasty side effects from the chemo, to say that I was struggling was understatement of the century. My Dad 'treated me' to a series of appointments with a private neurologist which basically included a couple of days of steroid infusions administered intravenously. I felt great, until I had a migraine in the car on the way home.

Cancer and Migraine continued to apply their combined might, and during the 'Whole Brain Radiotherapy' that was used to treat my first cancerous brain tumour (the second popped up only six weeks later), I was pretty much at the end of my tether.

Fast forward to today, and not only am I in remission from the Cancer, I have also not had a migraine for over a year. I can't identify the exact point that I noticed that I wasn't suffering from them any more, as you don't miss what you don't have, but what I do know, is that my two tormenters are noticeably absent from my life. God has been incredibly gracious to me and I am beyond grateful.

I hope that this new injection will help migraine sufferers to combat its devastating impact, and allow them to live a pain-free life. For those who have cancer and migraines, I pray that they may be healed of both.

Amanda

Dean and I athletically celebrating my pain-free life



Saturday, 2 December 2017

Pebbles on the beach

My Mum always used to love pebbles. She loved the smooth ones. The ones that you could clasp in the palm of your hand. Yesterday, after the celebration of life of a beautiful friend, I found one of my Mum's little pebbles with a dove painted on it. I held it in my hand and felt it warm to my touch. It was a real comfort as my tears fell for those who are no longer here with us. For those who enriched our lives and left behind an indelible imprint that even the most tempestuous ocean could not erase.

Then I imagined a beach full of pebbles all with God's gifts engraved into them - peace, love, hope, faith, joy and grace. Life ebbs and flows. Sometimes grief engulfs us like untameable waves. Other times the tide withdraws and there's a sense of calm. And in this calm, we know that we are loved.

Amanda


Friday, 17 November 2017

Another amazing woman taken by breast cancer

Today I had some absolutely terrible news. My friend Jayne died yesterday in the Douglas Macmillan hospice, of breast cancer which had spread to her lungs and bones. After seeing her only a few days earlier, it is desperately hard to believe that she has gone, leaving behind her wonderful husband, Mark.

I met Jayne over twenty years ago when six of us sailed around Greece in a majestic yacht under the guidance of our skipper, Andrew, swimming in the azure ocean, soaking up the rays and enjoying lively evenings on-shore.

After the occasional meet-up at social events, Jayne and I were re-acquainted in December 2013 at a Christmas party. I had been diagnosed with Triple Negative breast cancer in November, and had had a lumpectomy (or a wide local incision as it is formally known), two weeks before Christmas. I was having a short break to recover from my operation before commencing with chemotherapy in January 2014. Jayne breezed in to the party radiating health and (working the 'yachty-totty' look she had perfected on our island-hopping holiday) in a stylish sailor's cap. What she lacked in hair, she compensated for with her usual infectious warmth and smile. She had just finished her treatment for breast cancer and was celebrating with a trip to Australia. I was SO inspired, and truthfully, very envious that her cancer journey was over.

Cancer is vicious and pervasive. However, it also inspires a tremendous sense of one-ness amongst those at all stages of the cancer journey. As a result of our shared experience, Jayne became a very special part of my life and we shared the bumpy road of highs and crushing lows. Jayne was indefatigable in her pursuit of healing and was as knowledgeable on health and well-being as even the most educated of alternative therapists. She read voraciously and followed guidance on how to prevent her cancer returning to the letter, meticulously following a diet that was packed with all of nature's gifts from bee pollen to spirulina. She had success too. Treatment from a holistic therapy centre in Germany yielded a clear lung scan and the energy to continue on their wonderful and life-enriching trip across Europe in a camper van.

In an inspired move, Jayne and Mark spent eighteen months doing exactly what she loved...swimming in turquoise seas, immersing herself in nature, absorbing the beauty of the world around her and waking up with hope and joy every day. Ever the free spirit, this life focused on the simplest of pleasures and, though punctuated with appointments and scans, was powerfully uplifting to her soul.

However, the cancer returned and this awe-inspiring woman was taken from those she loved. Whilst confined to her bed, she had a little prayer box that she used to note down her wishes from God. My wish for her is that he has welcomed her home and that she can now be free.

Amanda


Monday, 6 November 2017

The gift that keeps on giving

As most of you may know, the breast cancer I had thrived on oestrogen and so, as a result of this, I have been taking Tamoxifen for over three years now. Many breast cancers rely on the hormone oestrogen to grow, and this type of breast cancer is called oestrogen receptor-positive breast cancer. Tamoxifen works by blocking oestrogen from reaching cancer cells.

Like most drugs, Tamoxifen comes with its own large list of side effects, including menopausal symptoms such as hot sweats, mood swings, nausea, fatigue, joint pain, muscle pain, forgetfulness etc. The list is actually much longer than this and for anyone else reading this who takes this drug, you'll be familiar with most of the side effects.
If you're at an age when you would soon enter natural menopause, Tamoxifen can nudge you into menopause sooner. Or in my case, I feel like I was thrown into it head first.

My usual night time habits go something like this..fall asleep quite easily, wake up within two hours, hot sweat, quilt off, freezing cold, quilt on, fall asleep for an hour or so, wake up, hot sweat, quilt off...can you see the pattern? I have now been like this since I had my second chemotherapy session and I was told that chemo had thrown me into the menopause so with the added Tamoxifen side effects, I pretty much run on maybe three to four hours' sleep per night maximum and have done for the last three years.


Tamoxifen can also cause non-cancerous changes to the uterus as it can weaken the womb lining...it can also increase the risk of blood clots, ovarian cancer and endometrial cancer (cancer in the lining of the uterus).
This brings me to the current situation that I have recently found myself in. Two years ago, at my smear test, I was told I had a slight prolapse. I had no idea what a prolapse was and as I had no symptoms, I can't say that I gave it much thought. In fact, I didn't even consult my special friend Mr Google. Roll on two years later, I have been experiencing certain symptoms that do in fact come with a prolapse.
One Doctor's appointment led to a gynaecology appointment where I was told that Tamoxifen (oestrogen blocker) was the likely cause of the prolapse. The wonder that is menopause and low levels of oestrogen are major factors for the cause of a prolapse.
Usually, a prolapse can be repaired but because I have to stay on Tamoxifen, the chances are that the same thing could happen again. Plus Tamoxifen can cause ovarian cancer and cancer of the lining of the womb and so for this reason, I shall be having a full hysterectomy and bilateral oopherectomy (removal of both ovaries) next week.
I shall be sure to keep you posted of my recovery and try to control my excitement at the thought of the side effects I'll endure once my ovaries are removed. Whilst most women undergoing the same operation can go on to have HRT, (removal of ovaries=no oestrogen production=menopause symptoms to the max), I won't be able to because of the breast cancer I had that thrived on hormones.

Debbie