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




Wednesday, 1 November 2017

Glorious normal



Within the daily stresses of life, it's hard to take a step back and appreciate how amazing normality really is. A number of my friends are suffering from cancer and are facing hideous challenges every day. For this reason, I wanted to write a post to remind us all to remember what a blessing normality is.

You click snooze on your phone three times in a row and wish you didn't have to get out of bed.

She is bed-ridden and longs for nothing more than to jump out of bed and enjoy the simple pleasure of a walk.

You're having a bad hair day. There's a unruly frizz that will not be tamed.

She has lost her hair twice during her cancer journey and with it, she has lost a sense of her identity. She would love to have the luxury of a bad hair day.

You worry about everything you have to fit in today and feel completely over-faced.

She is in pain and can think of nothing else but coping with it, moment by moment.

You get cut up by an impatient driver.

She longs to be able to regain her freedom and jump in her car and go anywhere she likes.

You are in a state of heightened anxiety about completing all the tasks on your 'to do' list.

She had a 'bucket list' but became too unwell to complete it.

You're disconcerted about all the presents you need to buy for Christmas and how you're going to afford it.

She is aware that she may not still be here at Christmas to share it with her family.

You're annoyed with someone about something minor and it's constantly on your mind.

She is facing the real prospect of death and it is never far from her thoughts.

Normal life can be challenging, stressful, anxiety-inducing and hard work. It can also be up-lifting, enriching, joyful and fulfilling. Take a moment to celebrate the beauty of the world around you. Relish the luxury of freedom. Be thankful for the wonderful gift of time spent with those you love. These are precious moments indeed.

Amanda

Friday, 13 October 2017

Why you should never lose hope

Facebook pinged up a memory today. It's a post that my husband Dean wrote after I was told that I only had months to live on 21st October 2015. It makes me cry to read it, but as I am two years on, with no cancer in my body and a confirmation that I am in remission, I thought that this may help people in the same situation to keep on hoping and praying. There is no summing up, or trite message at the end of this post, I will just let the words speak for themselves.

**Wife update**

We're absolutely devastated to share the following update with you.

We had our consultation with the oncologist yesterday who advised that, despite the strongest possible radiation treatment, the cancer within Amanda's brain is still there and unable to be treated further.

Amanda is dying - she has a number of months to live.

What we can expect to see over the next few months is a gradual deterioration in Amanda's condition to the stage where she's going to be unaware of what is going on around her. She's already having problems using her mobile phone and TV remote control, and her ability to say more than 10 words in a sentence is impaired too.

Last night was tough. We lay in bed and cuddled, cried, laughed, administered Amanda some morphine and then she slept, holding my hand. Amanda's Mum and Dad have taken it hard too (for those with faith, please say a prayer for them too).

The palliative care team will be here from tomorrow so we can start to sort out ongoing arrangements.

The photo I have attached to this update was taken very near to our beloved Spanish home a month after she had her Triple Negative Breast Cancer removed in December 2013, and just five days before starting a very gruelling chemotherapy course. It paints a vivid picture - the walk ahead into the unknown.

This is an awful time for us. You can begin to understand now why we were reticent when seeing any comments to our posts wishing us positive thoughts. It's not quite that easy, unfortunately.

Amanda has faith. I'm without faith. But I know that Amanda will keep a place for me 'up there'. Prayers may well be appropriate for many of you, but cancer is clinically unresponsive to prayers.

My love, my life, my rock.

Tears falling.


Sunday, 1 October 2017

It really is the thought that counts

A friend asked me yesterday what I would recommend as a present for someone going through cancer. That was an easy question to answer as my incredible family and friends were unbelievably generous and thoughtful when I was ill, and I still remember how their visits and gifts brought so much relief at such a difficult time.

So, here are some suggestions from the wonderful gifts I received when I was in the midst of cancer treatment:

Anything that brings comfort. Warm fleecy blankets, cashmere bed socks, furry hot water bottles, dressing gowns or pyjamas.

Gifts that make them laugh. Comedy books such as the Timewaster Letters or Football Bloopers kept me upbeat during chemo.

Chocolates and treats. A friend sent us a ginormous box of Thornton's chocolates (and when I say 'us', I mean that Dean was extremely keen to help me out by eating lots of them).

Flowers and plants. There's something lovely about being surrounded by flowers, and when I wasn't mobile, I loved looking at them and enjoying the scent.

Entertainment. A friend brought me an audio book subscription and others brought box-sets and DVDs which helped a great deal in keeping my spirits up.

Home-made presents. There's nothing lovelier than a home-made gift from a friend. Some friends brought round their own jam, or home-baked bread and soup and another sent a clotted cream tea. A colleague even did a painting of me and another made me some amazing hats that she had sewn padding into so that I didn't look bald.

Faith gifts. People from my church sent 'holding' crosses, books and prayer guides and the vicar came round regularly so that I could take Communion.

Memory gifts. Dean asked my friends to send me their favourite memories and photos. It was so lovely to receive these letters and every one brightened my day enormously. One friend created a memory box which I still treasure.

Other incredible gifts. A friend organised a video message for me from a comedienne I liked which was an amazing boost. Others made donations to a charity close to my heart and another raised funds to sponsor a room in my name at the new building the Oxford College I went to had recently built. That was a really incredible gift.

Whilst simply still being here is the most wonderful gift I could ever have dreamt of, a gift that I attribute entirely to God's grace, the other gifts were uplifting and tangible expressions of love. I will never, ever forget them.

I hope this helps you to find a suitable gift for someone who is suffering from cancer. However, and I speak entirely from the heart, the greatest gift is just your support, love and friendship. That means more than you can possibly know.

Amanda



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




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

Thursday, 11 May 2017

It's just like buses with me

So, I don't write a post for weeks and then I write two together. Well at least it keeps it fresh. Here goes...

For my birthday yesterday, Dean sent me a photo card of me and my parents celebrating my 42nd birthday at the dogs in Manchester (I'm known for my sophisticated taste in celebrations). To everyone else, this was just a nice gesture. To me, it was loaded with significance.

Firstly, it was the last birthday we would get to spend together as a family. I was away last year on my birthday and Mum sadly died two months later.

Secondly, I spent the following day in hospital with a suspected stroke. I had been in the office that day preparing a presentation and was running it by some students that were working with us. They smiled politely as a stream of nonsense came out of my mouth and I told my bemused colleagues that I needed to get some fresh air.

Earlier that day on my drive into work I had experienced an unusual sensation where I felt like honey was pouring from my eyes and as a chronic migraine sufferer, I assumed that this was just another aspect of this hideous affliction (slightly melodramatic but nonetheless true). I got home and collapsed on the sofa. My husband knew that this was unusual behaviour for me (at least more unusual than normal) and took me to the emergency doctor. He was excellent, and having met me before during my many cancer call-outs, he felt it was best to go straight to the hospital for reassurance that everything was OK. Things were far from OK as the experiences were indicators of a large malignant brain tumour that required treatment with surgery and then with Whole Brain Radiotherapy. As many of you already know, only six weeks after treatment, a whole new brain cancer appeared, which had to be operated on again by my phenomenal surgeon and neurologist (thanks again to her for her brilliance).

The rest as you know is (recent) history, and sitting here in the fading sunlight, I thank God for saving my life when all appeared lost. So the moral of the tale? Don't ignore unusual happenings in your body. Act fast. Seek help from your GP (out-of-hours if necessary). It could be the best call you ever make.

Amanda

Half joke, half fact





Tuesday, 9 May 2017

Let's celebrate the cancer champions!

OK, so it's not my phrase, but it is my sentiment. Today, as I celebrated being well enough to run (slowly), with the sunlight on my face, and the wind in my (fake) hair, I thought that it was about time to champion the many amazing people who have suffered, or are suffering with the big 'C'.

So today I celebrate the following champions:
Those who put on their wig/lipstick/suit/apron and got into work - you're amazing!
Those who wore an outfit that showed their scars
Those who visited someone who has cancer and lifted their day
Those who overcame a small challenge - went for a walk, tried a gentle exercise class or cooked breakfast for the family
Those who went through treatment of some kind and made a joke with the nurses
Those who had struggled to sleep but got out of bed anyway
Those who got up and got dressed despite the challenges it posed
Those who dealt with people's curious stares with a smile
Those who battled with the physical after-effects of cancer and kept on going
Those who took care of someone's needs, no matter how minor
Those who successfully operated on a cancer sufferer
Those who advised and supported a cancer sufferer
Those who took time out to share their experiences with someone who's not as far down the line as they are
Those who worried about whether their cancer had come back, but carried on with their day regardless
Those who are waiting for test results but put a brave face on it
Those who prayed for someone they love
Those who prayed for someone they loved and lost
Those who carried on despite the pain
Those who carried on despite the indignity
Those who died, but remain in the hearts of those who loved them
Those who are nearing the end

To all of these people; you are a champion. Don't forget it.

If you know a cancer champion then share this post with them and give them the encouragement to keep on going.

Amanda




Monday, 17 April 2017

It's me, your body, can you pick up please?

Before I contracted cancer, I rarely noticed changes in my body. I'm not sure if I was just too busy to think about it, or whether there weren't any that were dramatic enough to attract my attention. Now, I'm hyper-conscious of every tiny twinge, ache and sensation. Whilst I appreciate that nobody really thinks about the indicators of cancer until they or someone else is experiencing them, I can't express enough how important it is to observe these small notifications from your body. You wouldn't ignore a notification from a friend on social media, so why ignore your body when it's trying to tell you something? Me and my body have had a few fall-outs in recent years. It thoroughly hated the chemo and whole-brain radiotherapy. It wasn't keen on the deeply uncomfortable 'steroid years'. It didn't like having all its energy sapped out of it and the sustained surprise attacks from cancer really kept my body on its toes. I can understand why we stopped listening to each other for a while.

So I'm asking everyone today, well urging you really, to LISTEN to what your body is saying to you. Most people ignore the nagging feeling that something's wrong, but bodies are cleverer than us, they keep trying to get the message across. So why not put a shell to your ear and think about what you hear.

Have you noticed any changes in your breasts?
Are there any changes to your toilet habits?
Can you feel any lumps or bumps in places where they shouldn't be?
Are you suffering from headaches or visual disturbances?
Is there blood where there shouldn't be?
Have you lost weight without trying?
Are you having difficulty getting up stairs without being breathless?

If the answer's 'yes', then pester your GP. That's what they're there for. When I was working as an Early Detection of Cancer volunteer (ever so slightly serendipitous would you agree?), I watched a video of a young bowel cancer. It was like a little white pustule. As it was small, it was easy to snip away with minimal surgery. We then looked at an advanced bowel cancer which was wrapped tightly round the bowel and the bowel was barely distinguishable from the growth. I will never forget that image. So, don't ignore your body. Work in partnership with it. Check your body regularly. Go to your GP if you find anything unusual. Be a team. Most worries are simply that - worries. But some are the real deal and you'll be glad you listened.

Amanda




Monday, 3 April 2017

The big little things

So, this week I celebrated a little thing. Well, to me, and others in the same boat, it was a rather big thing. I actually tied my hair back! You may remember that a few months ago, I made a significant move in re-capturing the 'old me' by getting hair extensions. The great thing about them is that your own hair continues to grow whilst your extensions conceal the unruly little tufts that hide beneath them. My real hair at the top is now reaching just below my ears and under the hair at the back (which would, without extensions make a fine mullet that the even older me, circa 1985 would be proud of) has grown to collar length. Ergo...I can now tie it back! It's such a trivial thing set against the backdrop of the last few years, but somehow, it really matters. For cancer sufferers it's big little things like this that give you a little buzz. And, it's another step along the way to getting back to me.

Amanda

Me, before I tied my hair back this morning

Thursday, 23 March 2017

Why am I here?

Over the last couple of days Dean has been away for some gigs in Ireland. Whilst he was away I had time to reflect on the last few years. Here are the reasons that I'm still here.

1. The grace of God, without that I would have been long gone. What an enormous blessing.
2. An incredibly gifted neurological surgeon. She operated twice in a matter of weeks and I will always be grateful for her skills and optimism.
3. A top-ranking oncologist who took managed my treatment plan perfectly, whilst taking time to explain everything to me in a warm but pragmatic way.
4. My incredible father and husband who have carried me through the tough times with their unfailing support.
5. My wonderful friends who have lifted my spirits, made me laugh and listened when I needed them to. Many of them travelled from the opposite ends of the country to see me, two came from across the world when the news was bad.
6. Colleagues, ex-colleagues and clients and who supported me on my journey by sending letters and spurring me on with words of encouragement.
7. The church family, St. Lawrence's and Wesley Hall, without whose support and prayers I would not be here today.
8. Family friends and friends of friends. Over the last few years I have been overcome by the loveliness of people.

It's impossible to describe how grateful I am to everyone who has supported me on my 'journey'. I am truly thankful.

Amanda


Wednesday, 1 March 2017

Top 50 worldwide cancer blog - yes really!

Woo hoo! Our 'UKbreastcancertips' blog has been voted as one of the top 50 cancer blogs on the web by Feedspot Blog Reader. Yes, that's the whole worldwide web! We are thrilled to be sharing our experiences to help others who are facing cancer or know someone else who is. Thanks to all our readers and supporters. We've exceeded 140,000 views and we're proud to display our top 50 badge!




Amanda and Deb



Here are the other winners. Some real big players here and some really interesting blogs. Well done all.


Tuesday, 21 February 2017

Let's all ride the pirate ship

When I was younger, despite being the most travel sick kid in Britain (FACT: I have even vomited on the bus that takes you from the airport terminal on a two minute journey to the plane) I used to love theme parks. One of my particular favourites was the pirate ship as featured below. I'm far too old and far too health and safety conscious these days to enjoy the thrill of lurching from dizzying heights to plunging lows in a matter of seconds. Or so I thought...

Since my recent scare (click here to read Dad's blog if you missed it) I seem to have been emulating the pirate ship in emotional highs and lows for several weeks now. My poor husband and Dad have been the victims of this emotional piracy and it's getting rather tiresome. So I turned to my trusty friend Google, to see if this is 'normal'. Thank goodness. It is. Normal for a cancer 'survivor' anyway.

So for those of you who are wondering whether you're on your own emotional pirate ship, then here are my tips:

1. Be kind to yourself. No-one's expecting you to bounce back immediately. And it's not a linear process. Be patient. (Not my greatest attribute but I give it a go).
2. Do the things you love with the people you love.
3. Pray. God loves you and carries you through. I know my Dad is amazing but God the father is incredible.
4. Acknowledge how you feel. Fear, grief and loss are completely normal emotions. Express them don't suppress them.
5. Speak to other people who are in the same boat (or pirate ship). Support groups help in normalising difficult emotions.
6. Don't be afraid of recurrence. This is really hard, but if you can swap fear with faith then this will help.
7. Stay fit and healthy. I embarrassed myself completely this week by flailing around at a trampolining fitness class. It's impossible to be soul searching when you are concentrating on staying upright.
8. Avoid stress. I'm terrible at this but it can be helpful to avoid stressful situations. If you think you need additional support, your local hospice or the GP will offer a range of different types of help.
9. Get used to the new you. You are different now. The long-term after-effects of cancer might be physical such as a scar, or hair that's grown back with a mind of its own. Or it might be a new outlook that makes you feel isolated from those who haven't experienced what you have. Tell your friends and family how you're feeling. That's what friends are for.
10. Go to all your appointments. Don't be scared of bad news. With cancer, then you need to act fast if you notice any changes. A stitch in time and all that.

Above all, take support from every angle. For me it's my family, friends and church community. The violent swings of the pirate ship are no match for love, faith and peace.

Amanda


My emotions right now

Saturday, 18 February 2017

Mission: Remission

December 30th 2016 marked 3 years since my breast cancer diagnosis. January 28th 2017 marked 3 years since I had an operation to save my life, left sided mastectomy and Strattice reconstruction. 

Anybody who has had a breast cancer diagnosis (or any other) will understand the anxiety that surrounds every follow up appointment. Whilst we want/need the appointments with our consultants/surgeons as we crave the reassurance that we're doing well, the fear of recurrence is always with us. 

I had my follow up yearly mammogram and ultrasound last week. I don't talk about these ahead of time because I don't feel the need to, but even if I don't talk about it, it doesn't mean I am not thinking about it. You can bet I was thinking about it from the moment the hospital letter dropped through my door.

In fact, I was thinking about it in January as I knew it was almost 'that time'.

Anyone who has gone through a cancer diagnosis can easily convince themselves it's back. Face it, there is always that little tiny voice in the back of your head that says you know it has come back. It whispers in your ear while you are sleeping, or trying to sleep, in the middle of the night.

But I am happy to report that as far as the radiologist could see, my mammogram was clear. The ultrasound showed cysts that I've always had but nothing sinister to be seen.

The radiographer who performed the ultrasound recognised me as I did her, she was in fact the same lady who spotted that 'something she wasn't sure of' after I went up to have cysts drained 3 years ago and the rest is history. 

Looking forward to another year of happiness, good health and making precious memories with those that mean the most.


Debbie