Guest blog from Jayne

Hundreds of wonderful fun filled days have passed since I wrote for Amanda and Deb's blog on the 30th June last year. 

Just to recap, my breast cancer had spread to both of my lungs, the spread was classed as 'extensive' and I was given 3-6 months to live. The only option in the UK was chemotherapy to extend my life by a few months. We sold our house and bought a smaller one to release some money to buy a motor home, pay for private treatment and do some travelling.

I'll pick up after the last installment......
After we finished the housesit in Italy it was difficult to say goodbye to the dogs we had got to know and love over the past six weeks. We explored some more of the 'heel of Italy', a Tuk Tuk ride around Gallipoli being the highlight and then got the ferry over to the Greek islands where we spent seven glorious weeks exploring the beautiful green islands of Kefalonia and Ithaca. We saw baby turtles hatch and make their way to the sea, went horse riding, sailing and jumped off a mountain to paraglide down onto Myrtos Beach.

From Kefalonia we got a ferry back to the Greek mainland and visited Monamvasia, the ancient city of Epidavros, Navpleon, Athens and the Acropolis. Then a ferry over to Crete where we did some volunteer work at the 'walk with donkeys' sanctuary. I find it very therapeutic being around animals and to be able to help people who dedicate their whole life to helping abandoned animals felt really good and am sure played a big part in my healing process.

We caught up with old friends on the island and helped the locals harvest their oranges and lemons.

Then it was back to the Greek mainland to spend Christmas and New Year in the scenic mountain ski resort of Kalavrita doing a month long housesit for three adorable dogs and an affectionate cat. Our whole journey was interspersed with visits from family and friends and it made it all more wonderful to share our new experiences with people we love.

Throughout all this my cancer tumour markers (monitored by blood tests every six weeks) had continued to fall until the last test in December when one marker was a little raised. We had always planned to get the ferry back from the Greek mainland to Venice in January so considering the close proximity of Venice to the clinic in Germany (only five hours drive) and after a discussion with my doctor there we decided to book in for a week's top-up of immune boosting treatments and investigate the reason for the raised cancer marker.
Following scans the bad news was that the cancer had now spread to my bones, but the AMAZING news is that my lungs (where I had in excess of 18 tumours, the largest one being 48 x 32mm) are clear and cancer free! The doctor said I was fit to fly so we put the motorhome in storage and flew out to my favourite island of Fuerteventura. 

I loved driving around in our 'home on wheels'. It's exciting finding new places but I was feeling a little tired and just wanted some rest and relaxation and to put down roots in the sunshine for a while. The importance of vitamin D in cancer treatment can not be underestimated! At the end of this month some of my family and friends are flying over to help us celebrate my 50th birthday (which at one point, I thought I'd never see!) which will just be the icing on the cake.

So the outcome is that we have to come home a little earlier than planned to start some radiotherapy treatment for my bones but we have had a totally awesome, amazing journey. 

A favourite saying of mine...
Life is not about the amount of breaths you take,
It's the moments that take your breath away.

Live, laugh, love

Jayne

Update from Dean

**Wife update** (It's been a while)

First off, really sorry for the length of this post. As many of you know, I much prefer posting stupid photos from the internet and posts of few words to avoid the ridicule of being picked up on making silly typos by the wife. However, there is a good reason for typing out this epic tale.

A few weeks ago, Amanda McDonald experienced some brief but sharp stitch-like chest pains while she was enjoying her continued relationship with life. These lasted a few seconds but caused enough discomfort to bring them up in conversation. Whilst they weren't an immediate cause for concern, we did agree it was something to get checked out. We arranged to see a GP on Friday 27th January and while Amanda's oxygen levels were ok, the GP was of the opinion, given Amanda's rather chequered recent medical history, to report for a chest x-ray and blood tests at the earliest opportunity.

On the morning Monday 30th January, we left home and within the space of 80 minutes, had attended both for blood tests and for a chest x-ray via the NHS walk-in services. Bearing in mind the well-documented pressures the NHS are facing, the fact that Amanda could have both tests carried out at two different locations 3 miles apart within such a short period of time was incredible. We do have so much to appreciate in this country. Amanda also had her planned MRI scan on her brain take place the very same day.

Just after 5pm on Monday 30th January, and just 20 minutes after posting her incredible Facebook post (read it here: https://goo.gl/WpgvUK) Amanda's GP called to say that they'd found a cluster mass on her chest x-ray. The GP would arrange for a more detailed scan as quickly as possible but given Amanda's medical history, it was a cause for concern. We found out the next day that even for an urgent scan, we were facing the prospect of a 3-week delay for this to take place on the NHS. Thrown into the vacuum of uncertainty, Amanda couldn't face any delays and with assistance from the team at her medical practice, arranged for a referral to our local Nuffield Health private hospital.
At 8.50am on Thursday 2nd February, Amanda had a CT scan of her thorax. A date was set for a follow-up appointment on Tuesday 7th February.

On Monday 6th February, we were invited back to see the neurologist who performed both operations to remove the lesions to Amanda's brain back in 2015 and although thrilled that she told us there was no change from Amanda's previous MRI back in the summer of 2016, we were fighting the overriding sense of impending dread that we've experienced many times over the past three years as we really needed to know the outcome of the CT scan to her thorax. Amanda's not the most patient, and with what both our families have gone through in the past three years (with both our mothers passing away combined with the significant health issues that Amanda has found herself battling with), the wait for the outcome has been excruciatingly unbearable.

We met with Professor Brunt, our Consultant Clinical Oncologist who had looked after Amanda during her initial treatment for her breast cancer, at 3pm this afternoon. He got straight to the point - the results from the scan were fine. What had happened is that the mass found on the x-ray was likely to be an infection that Amanda had picked up earlier in January which hadn't fully cleared. As for her chest pains, he carried out an examination and the trigger points for the pain where Amanda was feeling discomfort was the cartilage in her breast which received the exposure to the radiotherapy that she had following her treatment for breast cancer back in July 2014. A natural thing to happen.

What this Facebook post doesn't convey half as much as I would have liked is the challenges and mental trauma the uncertainty of the last 11 days have had on us all - Alan, Amanda and myself. It's been horrific. We'd convinced ourselves that 'this is it'. Why? Well, look at the evidence. Having been told in October 2015 that there was nothing further that could be done for Amanda in terms of treatment for her various cancers, and plummeting to the depths of facing up to the realisation that you're living under the cloud of a life-limiting disease then making a miraculous recovery against all the medical evidence presented, we always knew that something would turn up just around the corner - we live for now, there's little point in planning too far ahead. Ironically, these past few months is the closest we've been in the last few years to living normally - normal everyday lives without worrying about what's ahead - until 11 days ago. There's only a precious few who have been in this position who will fully understand what I mean by the above. It's time to look forward and appreciate everything we have again.

So to summarise. Take the last 11 days out of the equation and things are actually looking as good as they have been for a long, long time for Amanda. Our neurologist next plans to see us in 6 months time for a routine scan.

As Amanda's dad says, "We're still standing". Or star jumping, as Amanda enjoys doing so much these days.

Thanks for reading.

(Post available to read on Facebook here)

A letter from me to me

Dear Amanda

Don’t be alarmed but this is a letter from the future. Before I go any further you should know that everything is all right. It’s more than all right in fact. It’s fantastic! But first I need to back-track. Let’s start with the bad news. There’s no easy way to tell you this but you have got some serious stuff to get through. I’m not going to sugar-coat it as that won’t help. You get terminal cancer. There. I’ve said it. It’s going to be rough. Super rough. And you have three years of rotten times ahead. I’m sorry. It’s tough to hear but I’ll tell you now that there is an extremely happy ending and it involves a miraculous event. But more on that later. Now cancer is not going to be fun. In fact, let’s explain. Cancer is not the enemy here. It’s the treatment. It’s AWFUL. Chemo is horrible. You get sick. Really sick and your body is ravaged by all sorts of nasties. Vomiting. Violent leg pain. Vicious migraines. Exhaustion like you wouldn’t believe. You feel tired now? Fatigue is a whole new level of tired. The kind of tired that confines you to the sofa with even a short journey to the loo becoming a Herculean effort. And I’m sorry to tell you, but you lose your long blonde hair. I know. I’m sorry. But you get it back. It’s wilder and slightly punkier, but it’s back. For a while you will agonise over whether it will return (they will tell you that it may not). But return it will.

I have more bad news to tell you, but don’t forget that this story has a fantastic ending. The cancer comes back. You have a few months where life is slowly getting back to a new ‘normal’ but then BAM! You get a sucker-punch that leaves you reeling. The cancer comes back. TWICE! In the brain of all places. Now keep your focus on the happy ending… you have a brain tumour the size of a plum that returns again after only six weeks. Whole Brain Radiotherapy ensues and it is horrific. The worst of all cancer treatments. You thought chemo was bad but this is far, far worse. You’re down. Really down. And there are times that you wonder if you can face another day. Amanda, this WILL pass. Just hang on in there and you will get through it. I know for sure because I am here. On the other side. Not heaven. Not yet. But somewhere where life is not only good but it is amazing.

There’s just a bit more bad news to tell you. You get fat. Really fat. You lose your hair again. You bloat like a bald balloon and it won’t surprise you to know that you hate this phase. But that’s all it is. A phase. When the steroids exit your body you slim right down, lose the hamster cheeks and your hair returns (albeit painfully slowly). WOW! We’re getting to the good bits now. The shallow stuff first. You get ludicrous amounts of presents. In fact you even start getting vases as presents as you have so many flowers. You get to look like a normal person again and people don’t give you pitying looks anymore. You have INCREDIBLE friends and family. They rally round you like you wouldn’t believe. You are so overwhelmed with kindness and well-wishers that you can’t help but beam. And get this. You feel at peace even when it feels like all is lost. The fat times. The sicky times. The vile migraine times. You glide through it all as you have God on your side. And that feels good.

There’s another rise as you start to feel well again. You exercise. You do a bit of work. You spend time with your loved ones and you feel like the luckiest girl in the world. But yet the story has a few more twists and turns. You suffer an unexpected but devastating loss. It knocks you for six and your family is once again cut down. Your condition is still terminal and though you still celebrate love and life, you know that time is running out.

But then. Stop press! Something incredible happens. You exceed your life expectancy and the doctors tell you that you’re no longer terminal! Your torturous migraines even vanish without logical explanation. At the end of all the turmoil, you get the miracle that everyone has been hoping and praying for. WOW!! (This news is worth double punctuation.) God is good. Life is great. And that’s the stunning end to the story. So bear with it Amanda. Be strong. Be peaceful. Rely on your faith. Rely on your friends, family and amazing husband. It’s going to be a tough old journey but you’ll make it through to become wiser, stronger and finally infinitely more grateful. See you there. I can’t wait!

Lots of love from Amanda x

The 'cancerverse'

For the last three years, I have been living in a sub-set of the real world. I call it the 'cancerverse'. It's where one day your universe becomes inverted, shrunken, myopic and at times, completely claustrophobic. Yesterday I read a fact, for example, that the median survival time in months for someone in my position (a Triple Negative Breast Cancer sufferer who went on to experience two breast cancer tumours in the brain and then had Whole Brain Radiotherapy) is four to six months. Scary. You can live a so-called 'normal life' and forget the possibility of death until you get an unusual symptom, a scan date or news of a friend who has just been diagnosed, or who is going through a tough time. Any incident of change thrusts you back into the 'cancerverse'.

So how do you break out? The 'cancerverse' can be an oppressive place, but it is no match for love, for prayer or for hope. A friend told me yesterday that she goes out for lunch every day she's not in chemo. Another friend is travelling, and relishing each new experience, being surrounded by nature. A kind gesture, a thoughtful card, a word of encouragement, the warmth of someone praying for you. All these things seek to liberate, to enlighten and to celebrate the joy of being alive. So, if you know someone who is in the 'cancerverse', please give them the greatest of gifts. Give them hope.

A reality check

Some of you may have heard me mention a friend called Kate. I met Kate on the chemo ward three years ago and she is one of the most resilient people I know. She has been enduring crippling cancer treatment for as long as I’ve known her, and this is giving her an extension of life, but ironically at significant cost to her health and well-being. It makes tough reading, but whilst we’re looking forward to a healthy and happy new year it’s important to remember those who are suffering. Here is her story:

“I am not good at doing things like this. But here goes…

I first got diagnosed in 2008 with Grade 3 breast cancer, [cancer has three grades according to how aggressive it is, Grade 3 is the most aggressive]. As a result, I had to have a mastectomy on the 5th December 2008. During the surgery I had to have all my lymph nodes removed as they were cancerous. I had radiotherapy and chemotherapy in 2009 and was taking Tamoxifen for five years.

When it came to five years I had surgery on my spine on my neck. I’d had problems with my arm and was sent for X-rays in March 2014. The surgeons were operating at the base of my head and saw a tumour. They then proceeded to scan all my head and found four more tumours. They were surprised that I wasn't having any symptoms! But I didn't have any. The day after, I went for another scan on my chest and found I had cancer on my lungs. I had three weeks of radiotherapy on my head, which was horrible. I used fall over a lot and couldn't talk properly. Then it was chemotherapy, which I am still on.

The last few months have been rubbish. With having chemo so often the Cancer Centre is like my second home. I've got another two brain tumours now. That makes seven I've got in total. Plus, I've got a tumour on my spine which affects my ability to walk and to turn in bed.

I've got constant pain in my head, arm and hips. I've been having mini strokes; my face starts with pins and needles then half of my neck goes numb and I have trouble swallowing. It then goes into my arm and it starts shaking with pain. Then it goes to my legs and I can't walk. After the last one on Christmas day, my head feels as if it's in a vice. I've been going dizzy, and the left side of my face is numb and hurts. I saw the oncologist yesterday who told me that if I came off treatment then that would be it, as the tumours will grow rapidly. All in all my head’s killing me, I am struggling with the pain, at the moment all I’m doing is crying as I’m struggling to do much.“

Kate

Throughout all of this, Kate carries on. She is several months past the terminal diagnosis she received and keeps on keeping on. If you have moment drop her a message of support on my Facebook page and if you can, say a little prayer that her suffering will ease.

Amanda

A big thank you to...

...all my friends, family, colleagues and clients who have guided me through this challenging year.

To those who pretended that my cheeks weren't larger than those of a chubby bunny...
To those who reminisced with me when I thought my time on earth was drawing to a close...
To those who were shocked by my complete appearance transformation...
...and ignored it completely...
To those who prayed ceaselessly for a miracle...
...and made one happen!
To those who cried at my terrible news...
To those who cried at my amazing news...
To those who showered me with gifts...
To those who sent cards and letters when I could barely move from the sofa...
To those who support me even though they don't know me...
To those who read this blog and help me feel like I have accomplished something...
To those who sent me goodwill messages on Facebook and kept my spirits up...
To those who helped me create beautiful memories...
To those who pretended that everything was OK...
...and then went home and cried...
To those who helped me to feel better about myself (Sarah at EgoTrip)
To those whose faith was so strong that death was not an option (that's you Dad)...
To all of you who walked with me when the going got really tough...
To Jayne and Kate, Carol, Jackie and Sue who are still suffering...
To my fellow blogger, Debbie for her support and friendship...
To my incredible friends who have cared for me and made me smile...
To those we have loved so much and are facing the loss of so keenly, in particular, mine and Dean's dear Mums...
To those I don't know but share the ordeal of cancer with across the world...
To those who love me and would change places with me in a heartbeat (that's you again Dad)...
To my spectacular husband for going way beyond the call of duty to take care of me...
To God who literally carried me through the tough times...

Two small words but heart-felt ones. Thank you.

Me on a particularly bad bloating day

Miracles DO happen

At the time of writing, it has now been three days since I passed my 'best case scenario' death date. It's unspeakably wonderful and I feel giddily thankful for the grace of God in giving me this miracle. I just wanted to say a huge thank you to all of you for your love, your myriad kindnesses, and above all, your prayers. They change the world and they have certainly changed mine. For now though, I will celebrate the best thing that's ever happened to me by enjoying the simple pleasures of a walk on the beach with my wonderful husband. It doesn't get better than that.

Honestly, they really do happen!