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.


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.


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.


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.


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.


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.


And for healing, love, friendship and joy