Monday, 5 November 2018

To see a rainbow we must deal with the rain


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

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

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

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

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

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

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

Amanda

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


































































































































































































































































































































































Sunday, 9 September 2018

200k wanted

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

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

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

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

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

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

Amanda



Thursday, 6 September 2018

Fresh beginnings: a post from Amanda's Dad


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

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

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

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

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

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

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

Amanda’s Dad


Thursday, 12 July 2018

Amazing News. Amazing Grace.

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

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

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

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

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

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

Amanda


Tuesday, 12 June 2018

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

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

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

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

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

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

Amanda

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






Friday, 1 June 2018

Not at all laisez-faire

You would have thought that I would emerge from the clutches of Cancer with a new 'laisez-faire' attitude, a relaxed lifestyle and a commitment to practicing mindfulness. Well the truth is, I'm still the same Amanda that turns up early for everything, prepares for every little eventuality and can't leave 'til tomorrow what I can do today. And by 'today', I mean 'now', or more specifically 'right now'.

So, I felt compelled to comment on some of the clichés that Cancer 'survivors' (a slightly uncomfortable phrase which makes me feel like I'm in an exclusive club that I don't deserve membership of) are expected to observe.

Be in the moment
Well, yes. I am. But before I know it, I'm in the next one, and to be quite honest, it's difficult to be in the moment when you're thinking that you should be in the moment.

Every morning is a fresh beginning
Is it though? What about last night's washing up (who am I kidding? It's Dean that does all that), what about my 'to do' list? Every morning is less of a fresh beginning and more of a new quest to tame my hair after the sleep fairy has made it not really 'just stepped out of a salon' but actually 'just stepped out of a wind tunnel'.

Time heals all wounds
Ermm...maybe. But I still have a whopper of a scar across the back of my head through which my two brain tumours were artfully extracted, one on my breast and one under my arm. And this is nothing compared to my Cancer comrades who have lost their entire breasts or other parts of their body and have had to take lots of confidence knocks and face daily practical challenges.

There's light at the end of the tunnel
OK, that's a good sentiment where I'm standing. I'm nearly three years past my 'expiry date' and am giddily thankful to God, my brilliant oncologist and neuro-surgeon, my husband, my Dad and my amazing friends. But if you're still in the middle of harrowing Cancer treatments, that light seems like a long way away. And when you emerge (and hopefully you will) a little of the dark can follow you around.

Hope springs eternal
Whatever happens to a Cancer sufferer there is always hope, and its siblings, faith and joy. Hope for recovery, hope for a long life and hope that you never have to suffer a recurrence. For me, it's hope that whatever happens in this life, I have been given a no-strings attached (wholly undeserved) place in Heaven through God's grace and the death of his son, Jesus.

Amanda


Monday, 28 May 2018

An attitude of gratitude

Sometimes, I don't take enough time to express my gratitude. It's all too easy to forget that in October 2015, I was diagnosed with "months not years" to live and that despite this, I am still here. So as I walked this morning with a lovely friend (who has an unusual form of cancer), I felt extremely thankful. So, I thought it might be a good idea to share a few things that I am grateful for (from the mundane to the mind-blowingly amazing) that this incredible world has to offer...

1. A walk in the warm sunshine with a friend
2. A smile from a passer-by
3. The beauty of nature
4. The sounds of the birds
5. Enjoying another birthday
6. Being comfortable and safe
7. Laughing with my husband
8. Enjoying my God-daughter's 'knock knock' jokes
9. Waking up to sun-light seeping through the curtains
10. Being peaceful
11. Knowing that at this moment, everything is OK
12. Cherishing time with my Dad
13. Having the freedom to make my own choices
14. Being loved
15. Spending time with loved ones
16. Reading a book from cover to cover
17. Seeing the cherry blossom on the trees
18. Hearing from an old friend
19. Putting dates into my diary
20. Overcoming physical challenges
21. Being uplifted by my Church community
22. Feeling inspired by the resilience of others
23. Being able to travel
24. Celebrating the good news of friends
25. Remembering the people I've lost with fondness
26. Witnessing an answer to prayer
27. Enjoying a trip to the theatre
28. Blasting out music in the car
29. Enjoying a meal that someone else has cooked
30. Oh, and being saved from imminent death is quite an important one

I didn't have a bucket list. I don't even have a bucket. But God's Grace and miraculous healing have given me a myriad of blessings, some huge, some tiny. But I am wildly grateful for them all.

Amanda




Thursday, 10 May 2018

A (different) life begins at 40

Ever since I was very young, birthdays have been a big cause for celebration for our family. Largely driven by my Mum, both my sister, Steph and I would receive a mountain of amazing presents (although she was more than slightly disadvantaged by her birthday being two days after Christmas). Even as an adult, the volume of presents did not reduce, and I will never forget my Mum's thoughtful present giving.

But without (the lovelier) half of my family, and with the unwelcome arrival of cancer only months after my 40th birthday, birthdays were never to be the same again. OK, well that's a bit melodramatic, but also, unfortunately, true (so far).

Just after my celebration of the 'big 4-0' I had a letter to invite me to a check-up with the GP (I never knew about these beforehand) but they're to ascertain your health against a number of criteria: weight, lifestyle, bloods, cholesterol etc. All my results were positive.

Then, ironically, after finding a gob-stopper sized lump in my breast and seeing a variety of specialists, I was diagnosed with an aggressive kind of breast cancer, Triple Negative. 'Positive' to 'Triple Negative' was a startling transition to say the least. This was an unwelcome twist on the old adage, 'life begins at 40'.

On my 41st birthday I felt like I had been hit by a sledgehammer, having just finished my sixth session of chemo the day before. I had a few weeks to recover before the radiotherapy that started in June. But, I was alive, albeit bald, exhausted and sickly, and I was extremely grateful to God for that (the 'alive' bit not the 'bald, exhausted and sickly' bit).

On my 42nd birthday, I went to the dogs (literally and metaphorically) and we celebrated my 'victory over cancer' (prematurely as it turned out) and my lovely friend sponsored the last race and we all piled onto the winner's podium.

One day later I was in hospital, before I'd even packed away my birthday presents (it is obligatory to display them for at least two days afterwards). I was admitted with a suspected stroke which was later revealed to be a cancerous brain tumour (a metastasis from the original breast cancer, so, a breast cancer on the brain).

On my 43rd birthday, I was more than a little nervous. I fled the country to Spain (with travel insurance the size of the National Debt) and lounged around in the sun (sun-block factor 900+) and enjoyed it immensely.

My 44th birthday was a transition from cancer grimness to a new era of tentative hope and a slow rebuilding process. NOTE for language enthusiasts (you know who you are): I looked on the online thesaurus for an alternative word to 'transition' and was horrified to see the word 'metastasis'. I am sticking with 'transition' for now.

So, later tonight I will be celebrating my 45th birthday. It is with joy in my heart that I am still here, with sadness in the pit of my stomach (no, I don't know why I feel it there) for those who are not here with me, and for those who mourn their loved ones who will not see another birthday, and with boundless thanks to God for giving me another year in this beautiful world.

Amanda

And for healing, love, friendship and joy






Friday, 6 April 2018

Lifestyle changes for sharks

There's been a great deal of coverage of Cancer Research UK's report on 'preventable' cancers. Of the 38% of preventable cancers, 15% are caused by smoking and 6% by obesity. I am a huge fan of CRUK's work, but I have to say that this is not a ground-breaking revelation. It is also not particularly helpful to cancer sufferers who have gone through enough with all the horrors of cancer treatment and certainly don't need to be told that they are in some way culpable for their illness.

The implication that cancer is, in some cases, caused by 'lifestyle factors', is, for a tee-total pescetarian who exercised regularly and never smoked a cigarette, more than a teeny bit annoying.

So, I was interested to interrogate this assertion a little further. On CRUK's website it is stated that "cancer is primarily a disease of older people...on average each year, half of the cases in the UK were diagnosed in people aged 70 and over". We're simply living longer. So, unless older people throw caution to the wind when they hit the big 7-0, and start chain-smoking and over-dosing on pies, their lifestyle is not really an issue.

I also wondered if cancer is a new phenomenon based on our diet, environment and sedentary lifestyle. There are a few things to consider here. The world's oldest documented case of cancer was reported in ancient Egypt in 1500 BC. I suspect that the ancient Egyptians did not lounge around on comfy sofas doing nothing (in fact, they had only low level wooden stools) but were largely pretty hands-on working as bakers, soldiers and farmers. Could this really be a cancer-causing lifestyle?

Another mystery is why animals get cancer. Now, I've seen some particularly fat cats and waddling dogs, but is their 'lifestyle' really causing cancer? Well, no, of course not. Scientists have known for more than 150 years that sharks get cancer and they're not snacking on junk food, but anything from molluscs to seals. And they can suffer from melanoma. An opportunity for shark sunglasses perhaps?

According to the Wildlife Conservation Society, cancer accounts for 10% of animal deaths and even threatens some species with extinction such as Tasmanian devils. Viruses are also responsible for cancer in turtles, dolphins and porpoises. If only they could smoke less and swim a little faster, their outlook might be better.

OK. This is largely tongue-in-cheek. And, of course, it's important for everyone to live the best and healthiest life they can. That's a message we can all agree on. But for those of us who have, or have had cancer, it's not new and it's certainly not your fault. But as for this giraffe...


Amanda

Friday, 16 March 2018

Molehills and mountains

Well it's been nearly two and a half years since I was diagnosed as having "months not years" to live on 21st October 2015.

The many mountains I have climbed (metaphorically speaking, I am a rubbish walker) have been well documented on this blog. So this post is dedicated to the myriad molehills that I have overcome since that momentous day. The little but ordinary things that make me feel 'normal'. Here are five of them...

1. I finally lifted my two-year-long self-imposed photography ban. I have not only appeared in photos, I have also initiated the capturing of my normal-sized head in a selfie. This was long overdue as Dean's new colleagues were convinced that I was too grotesque to be captured on film, kept out of sight in a dungeon or even worse, that I was entirely fictional.

2. I have had a bad hair day. Well, a few actually. My post-cancer hair looks fantastic when I've just 'stepped out of the salon'. However, I wake up in the morning looking like an 80s tribute act and on occasion, have terrified the postman.

3. I have thrown away the crocheted hat that I used to wear whilst I had no hair (exacerbated by a face the size of a small planet). Wigs and migraines proved to be a pretty horrible combination, so I bought some fake hair from the Cancer Centre and my wonderful friend Lucy made some silk hats and attached the long blonde fake hair. Amazing!
Me with a bald head, a wonderful hand-made silk hat and fake hair from the Cancer Centre.

Disclaimer: Not actually me. My face was twice this size.


 4. I no longer attract sympathetic looks. There's a subtle, but noticeable reaction that a person who is unusual in some way evokes (a bald head, a head-scarf, massive cheeks etc.). It's a double-take combined with a dose of curiosity and a pinch of sympathy. This is multiplied by ten if it's someone you know but hasn't seen you lately. There's a shock phase, then an embarrassment phase and then an over-exaggerated trying-to-hide-your-horror phase. Now, it's a more favourable "don't you look well?" comment, unless I've just come back from a run and I'm red-faced and huffing and puffing with the exertion.

5. One molehill I still struggle with is cancer advertising. I think that cancer gives you an empathy booster switch and I can't watch a cancer ad or programme without crying my eyes out. I watched Stand Up 2 Cancer's celebrity bake-off including Bill Turnbull, knowing that his cancer had spread, but also that he didn't know about it at the time of filming. In the video at the end, he was so lovely about his family and endearingly candid about the spread of his life-limiting cancer, inspiring others to act rather than ignore their symptoms.

So, if you're suffering from cancer and have a huge climb ahead, just be assured that it's amazing on the other side, and that you too will soon bemoan the multiple molehills of normal life! And, if you have any unusual changes to your body, speak to your GP. Early detection of cancer gives you a significantly better chance of recovering from this hideous disease and getting back to a gloriously normal life.

Amanda




Sunday, 11 March 2018

Cancer and Mums

For many, myself and my husband Dean included, Mothering Sunday can be a challenging day. We won't be jostling for a family table at a local restaurant or surprising our Mums with flowers. Both our Mums are gone, but certainly not forgotten.

But this is a cancer blog, so this post is a tribute to all those Mums who have been taken by cancer, to all those Mums who are suffering from cancer, and all those Mums who had to endure the devastation of watching their child, young or old, suffering from this hideous disease.

My Mum was profoundly affected by cancer. She lost two of her beloved brothers to it, and her beautiful niece who was also bridesmaid at my Mum and Dad's wedding. She would often turn up the stereo full-blast to listen to 'He ain't heavy, he's my brother' by the Hollies. Having lost my sister to Meningitis in 1992, and then having to endure watching me suffer from the savage effects of chemotherapy, radiotherapy and two brain surgeries, it was as much as she could bear. It is a great sadness to me that she never got to hear about my wonderful remission news.

Today will also be a sad day for Dean and his sister, whose Mum was taken by cancer only two years ago. A wonderful Mum with an effervescent personality, an infectious laugh and a passion for watching any kind of sport on TV (as long as it didn't include darts player Phil 'The Power' Taylor - she would switch off the TV instantly whenever he came on!) she is sorely missed.

For many of my friends, this is a tough day, as surrounded by ads and posters for Mother's Day gifts, they only have special memories of their Mums to hold on to. Some of them were lost to cancer, many to other diseases.

Other friends are doing everything they can to support their mothers through the ravages of cancer, wishing they could take it away from them and praying for respite and remission. Some of my friend's Mums are nursing a partner with cancer, or devastating diseases such as dementia or Alzheimer's.

And, of course, there are Mums who have cancer, or are in remission, and have plastered a smile on their faces whilst suffering countless debilitating treatments whilst still fulfilling their most important job...being a Mum.

Finally, there are some Mums whose young children have faced the terrifying ordeal of cancer and I can only imagine how painful this must have been.

So today, I thank God for all the mothers who have loved us and supported us, battled with loss and are now no longer with us. We are, or have been blessed to have you.

Happy Mother's Day!

Amanda



 


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