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.


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 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.


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.


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.


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.

"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 NOT suggestive of a tumour"

"No lymphadenopathy and no breast lumps"
"This is an excellent result from the surgery and radiotherapy"

"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.


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?


Me on a good day