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!

What a difference a day makes

In February of this year I wrote this post:

Apart from some pretty heavy duty insomnia, memory loss and impaired mental function I'm actually doing OK for someone who is approaching their 'expire by' date. So I thought I might try to apply some logic to my current situation, partly for my peace of mind, and partly for some clarity for those who read this blog. 

So from November 2013, the sequence of events has been as follows:

10th November 2013: Find lump
12th December 2013: The glamorously named 'Lumpectomy' takes place
24th January to 7th March 2014: Chemo one to three - FEC (what felt like interminable sessions of intravenous poison administered via giant syringes)
28th March to 9th May 2014: Chemo four to six - Docetaxel (as above but with added baldness and agonising muscle pain)
21st June 2014: End of three weeks of radiotherapy - like water off a duck's back
15th May 2015: Diagnosis of secondary breast cancer to the brain (although I knew it could happen, this did completely knock me for six - tough times indeed)
End May 2015: First brain surgery (apart from a vicious twenty four hours after surgery, I was walking round a local beauty spot twenty four hours after that and felt great)
Mid July 2015: End of intensive three week period of whole brain radiotherapy (unspeakably painful and seemingly unending,the worst treatment of all)
August 2015: After all this, the tumour came back at exactly the same size as it was before although now I am completely bald, weak as a kitten and constantly vomiting (feeling a bit sorry for myself at this stage) 
August 2015: The pugnacious growth is then removed again and although there is some impairment, I am OK
13th October 2015: Discovery of pulmonary embolisms due to inactivity (the irony!)
21st October 2015: Terminal diagnosis received but as of my last scan my tumour had not returned

So this brings us right up to date. 

I'm feeling OK. And as it's hard to believe that my health could deteriorate quickly, I'm cautiously making the most of things even more than ever. I recently watched a TV programme featuring Rowena Kincaid, one of my cancer contemporaries and although she's not in the best of health, she is still with us and living life to the full (as much as constant treatment will allow). (programme available to view until mid-March 2015 via this link >>> http://www.bbc.co.uk/iplayer/episode/b071fb66/before-i-kick-the-bucket-the-whole-story )

Like her, I feel like this really can't be the end. So I've done some calculations. According to my oncologist, my diagnosis from 21st October 2015 was "months, not years", however according to Cancer Research UK, for someone like me who is healthy (comparatively), young with a single site tumour and no metastasis, (all comparative bonuses) this could be up to 13 and a half months as a best case scenario. So all this number crunching would bring me to the 4th December 2016. I just need to make the most of my time until then and who knows, maybe even push it further to sneak in an extra Christmas. Now doesn't that sound like a beatable target?

Transcribed by Dean for Amanda.

This is today...

On reading this today I feel an odd combination of elation and sadness. Rowena Kincaid is sadly no longer with us. That's also the case for my wonderful Mum and my lovely friend Shelly. Christmas is fast approaching and so is my 'death date', 4th December 2016. So is the end nigh? It certainly doesn't look like it to me. My 'months, not years' prognosis has been reversed, and I now 'only' have secondary cancer. I am a lot fitter than in February and go running three or four times a week (albeit super slowly). I still have no metastasis (my cancer hasn't spread from my brain as far as we know) and with the help of a very patient hairdresser, I now have long, blonde hair again. I'm enjoying working part-time from home and I've bought and wrapped all my Christmas presents. Amazingly I haven't had a migraine in months and my recent mammogram was clear. 

I personally feel like this is a sure-fire miracle. In just nine months my life has been completely transformed and I get to spend an uneventful (roughly translated as 'wonderful') Christmas at home with my amazing Dad and husband. I feel completely uplifted and blessed beyond words. I know that others have been less fortunate than myself and I pray for them daily. But for now I want to sail past the 4th December and celebrate Christmas with my nearest and absolute dearest hoping and praying that it's the first of many, many more. 

Amanda

A surprise call

Whilst on holiday in Spain, my head buried in my third novel of the week, I was extremely surprised to receive a phone call from my GP. My heart was in my mouth as I tentatively answered my mobile. First, he asked me how I was doing and I explained that I was doing extremely well and he said that he was pleased to hear it. The reason for the call was to remind me that I was still on a 'DNR' list for palliative care (in my case the 'end of life' team) and it was a year since I had signed up to make it clear to my loved ones that I had made the decision to not be resuscitated in a situation where this would be necessary. 

To those who are unfamiliar with a 'Do Not Resuscitate' order, it is a written instruction from a doctor which instructs health care providers not to carry out CPR (cardiopulmonary resuscitation) if the patient stops breathing or their heart stops beating. Either way, it's not looking good for the patient and they choose well in advance of this moment (when they are well enough to decide, usually when they are diagnosed as critically or terminally ill but still have all their faculties) to make the decision not to be resuscitated. This decision relates specifically to resuscitation and not to any other type of treatment or medication and is not made lightly by the patient, but in careful consultation with medical professionals. Resuscitation includes mouth-to-mouth, electric shocks to restart the heart and breathing tubes to open the airways and is only implemented in a dire emergency. The reason to have a DNR in place is that if I am in such a desperate state of health, and this choice will simply defer the inevitable, I would prefer to die naturally than to have a desperate and destructive fight for a last glimmer of life. 

Fast forward to today, it was a shocking reminder of how close I had been to death only one year ago. Lying on my roof sofa (my favourite place in all the world), I couldn't be further removed from those testing times. So, did I remove myself from the list? For now, neither I nor the GP felt that it was appropriate to stay on the list, so I was excited to ask to be removed. This only serves to remind me how far I've come and how blessed I have been. So, back to the book, back to living a wonderful life and back to gratitude that I am here to live another day.

Her Story Too

Following on from Her Story (The last three years have actually been like a soap opera)

I remember the day in question as clearly as if it was yesterday.

It started out as a perfectly normal October day until I received a telephone call from Amanda.
Now Amanda and I have seen each other regularly ever since we met on my birthday back in March 2014, whilst we were both having our chemotherapy session. We have seen each other on a weekly basis when circumstances have allowed us to (we both seem to now take more holidays than previously), and if we haven't been able to meet up, we have called each other for a chat.

So, going back to the phone call. As soon as I said 'Hello Amanda', her words were 'I've got some bad news, I'm dying'. That was it, no sugar coating the issue, no idle chit chat beforehand. As far as bad news went, this ranked No 1 in the 'Top 10 things you never want to hear' list. This pushed the previous two bad news phone calls, both brain tumour related, to the bottom of that same list.
Devastated beyond words doesn't even begin to describe how I felt to hear those words coming from this lady who had become one of my closest friends.

Last Christmas was tinged with immense sadness, knowing that it was likely to be the last Christmas that Amanda would be with us. I know that none of us know when our time is up or even if this year will be mine or a loved ones last Christmas but actually being told that you have months left to live and not years is quite fearful by anybody's standards.

Being given this news, many people would have curled up in a corner and cried and been full of self pity but not Amanda. This very special lady organised a pre funeral celebration of her life as she wanted all her many friends and family to be left with a lasting happy memory of her. Ever since that dreadful day, Amanda has spent the last 12 months enjoying life, meeting up with her friends for long walks and lunch dates, enjoying holidays and generally just spending time with the people she loves and cares about.

And now here we are, the last year has flown by again, which should be a reminder for everyone, that life is so very precious. We should all love our families, love our friends and never take our health for granted. Long may Amanda and I remain in good health and the best of friends.

A guest blog from Amanda's dad

The end of a year and the beginning of a new year are times for reflection and remembrance, and 2016 is certainly one to be remembered with extremely mixed emotions.  My mind goes back to this time in 2015 when Carole and I were contemplating Christmas 2015, albeit with acute apprehension, as it seemed quite likely that it could be Amanda’s last Christmas.  Who would have thought that 2015 would instead be Carole’s last Christmas and that in 2016 Amanda would miraculously still be with us?

Carole’s condition(s) had seemed to be under medical control through her various consultants, whilst Amanda’s were deemed to be terminal.  However, we enjoyed Christmas 2015 doing the traditional things that we’ve done for many years, and got through December 27th remembering Amanda’s sister Stephanie’s birthday; she would have been 40 years old this year.

In a previous blog Amanda has mentioned a plaque that I bought for Carole engraved ‘Every day is a gift from God’, and it really is!  I believe that we should all live every day as if it were our last, and I’ve certainly got no regrets at all on how our family has lived through the years when we were all together.  We have had a tremendous life filled with love, laughter (a very important ingredient) and had amazing holidays.  We also have been blessed with brilliant friends with whom we shared our lives, and not surprisingly those same friends are still there supporting me through this surreal period of my life. Sadly two of these families have suffered bereavement and serious illness as have Amanda’s husband’s family.

The Bible tells us that God doesn’t give us more than we are able to deal with and I truly believe that is one of the reasons that Amanda is still alive; I couldn’t cope with life without her.  Amanda and I visited Christian Healing rooms not too long ago where it was implied that we had both been spared to do special work; we are both up for it.

Only yesterday Amanda had hair extensions and she looks absolutely stunning, and to me and everyone that has seen her recently the old Amanda is back!  As her father and seeing her most days I tend to notice changes, but recently these changes are certainly for the good.  She is also getting involved with certain projects at her old workplace; this is a good thing for her I feel, but a challenge after having such a long and arduous lay off of course. 

Going back to my first sentence Christmas 2016 will be filled with mixed emotions. It will be a cocktail of celebration and sadness, but with a mixer of wonderful memories of Christmases gone by. God willing we will have many more ahead of us to share.

His story

A Sunday in late October 2015 like no other Sunday. We'd found out a few days earlier that there was nothing more medically that could be done for Amanda, and we'd put out an invitation to Amanda's many friends to join her at her favourite church  for reflection. Not knowing how many would turn up, we were amazed that upwards of 40 people had put aside their usual Sunday plans to join us in quiet, tearful reflection. People had shelved plans to travel far and wide, and in some cases, putting off trips away with their own family and friends (you know who you are).

These same people visited church with Amanda time and time again over the next few weeks, and the special "pre-funeral funeral" and additional fundraising in January 2016 at Caverswall Cricket Club presented further evidence that the love for Amanda by many people, including scores who had never met her, only goes to show the number of lives that she has touched.

Amanda has never lost her faith at all during the whole period with coming to terms with cancer. Memories come to mind, such as the owner of a local Middle Eastern restaurant presenting her with blessed water that he had returned with from the Zanzam Well in Saudi Arabia during a recent pilgrimage.

While 2016 has dealt its fair share of devastating personal news, Amanda's miraculous change of circumstances, attributable to many many factors, provides us all with many reasons to look forward to times ahead and treasure every moment the precious gift life gives us.

Her story

This is a two-part blog post with my perspective of the last year followed by Dean's sometime next week.

On this day last year I was given the shocking news that I only had months to live. I wasn't scared. I didn't cry. I just felt a sense of calm acceptance. If you're a cancer patient, you will know that there is a special room for news of this kind. It's small but has colourful soft furnishings to somehow (literally) soften the blow. The kind nurse called Dean and I back into the 'room of bad news' to help us to digest the information we had been given. He cried. I held his hand and we discussed priorities, like how on earth to tell my Dad (who was waiting outside) that his remaining daughter was dying. There was nothing else to try. It was just left to us to make the most of the precious time we all had left. Mum and Dad were completely devastated and Mum apparently said to my Dad, "what on earth are we going to do now?"

Then fast forward a year and I am wrapping Christmas presents (OK, I know it's ludicrously early) for a Christmas I thought I would never see. I have medical appointments in January, and I just got back from a run. I'm almost human looking. My cheeks have subsided and I now have hair, albeit as my friend described it, "you look like you just got off a motorbike!". I am even doing some work on a flexible basis. Life is good. Safe. Normal. Wow...'normal' is fantastic!

One year at Christmas, Dad bought my beloved late Mum a plaque that said 'Every day is a gift from God'. She absolutely hated it (but that's another story) but to my way of thinking it's absolutely right. I've looked death in the face and it didn't scare me. The last year has been difficult and painful, but also full of blessings. I lost my Mum but was uplifted by the love of friends and family. Every day really is a gift from God and I am grateful to receive it.

Amanda  

Cancer quiz

I came across an interesting article on cancer myths and thought I would turn it into a quiz to bore your friends with. All facts are sourced from this article on the Cancer Research website. The answers can be found below.

Questions
1. Is cancer a new disease caused by our modern lifestyle?
2. Many people muse about why cancer is on the rise or reaching epidemic status, in reality, the primary cause of cancer is one that we can do nothing about. What is it?
3. Which superfood is the best antidote for cancer?
4. Which much maligned food is wrongfully accused of causing cancer?
5. What is the most effective treatment for cancer?

Answers
1. Cancer is not a new phenomena - it wasn't created by modern diets or processed foods, it's as old as the hills. It was written about by Egyptian and Greek doctors and cancer was even discovered in a 3,000 year old skeleton.
2. Age - as we are living longer, our likelihood of getting cancer increases as we get older.
3. None of them. A healthy lifestyle will help to minimise your risk factors, but in reality there is no evidence of any foods having an impact on your chances of getting or curing cancer.
4. Sugar - sugar does not feed cancer cells, but further research is underway to understand the difference in energy usage in healthy versus cancerous cells.
5. Surgery is the most effective treatment for cancer, providing that it has been caught early enough.

Hope that helped while away a few minutes, and don't forget, the most effective way to tackle cancer is by catching it early. So be vigilant, observe any changes in your body and get to your GP sharpish.

Amanda

Mammogram

Since I had my incredible news a couple of months ago (although I still had secondary cancer, I was no longer classed as 'terminal') I was added back into the mammogram cycle by my local hospital. For those who haven't experienced the joys of a mammogram, here's what happens.

1. You have to not wear deodorant
2. You have to undress to the waist, so wear a separate top and bottoms for ease (a onesie would be a bit of a problem)
3. A lovely nurse puts your breast into a machine that closes downwards onto it (see below)
4. It hurts...a lot, but only for about fifteen seconds
5. Then your next breast goes through the same procedure
6. Then you go through the same procedure for a sideways view of the breast
7. You're done in ten minutes...max
8. You try to peek at the screen but the nurse is wise to that game and you are advised that you will be told your results by post in six weeks
9. That's it really
10. The most challenging part is finding somewhere to park in the hospital car park

Amanda

Mammogram machines: not to be mistaken for juicers

Moving Forward

The last few weeks have seen me attending appointments at the hospital with my oncologist and also with the surgeon/consultant who carried out my operation, (mastectomy and strattice reconstruction January 2014). Both of these appointments are my follow up reviews since completing the grueling treatment that is chemotherapy.

My first review was with my oncologist. If you haven't yet had a follow up review, there really is no need to feel anxious. If you are treated as well as I was then you can be assured that you'll have a thorough examination. I had a breast, neck and armpit examination carried out in the presence of a breast care nurse, asked many questions about my general health and then told that he doesn't want to see me for 12 months.

Yesterday, I had a follow up review with the consultant who carried out my operation. Following on from the original operation, last September I had my other breast uplifted and a nipple reconstruction on the 'new' implanted breast. In May of this year, I finally had the last part of my treatment to what has been a lengthy and drawn out process. I had the nipple/areola tattooing and this was carried out by one of the breast care nurses who are trained in tattooing procedures. The time that has passed since my operation on January 28th 2014 until the final part of the journey on May 19th 2016 was almost two years and four months.

Again, I had a second thorough examination carried out by the consultant. In fact it was exactly the same as carried out by the oncologist. He told me that my 'new' breast was looking excellent but then he would do, he was admiring his own handy work!

He also doesn't want to see me for 12 months. This is encouraging news for me. Understandably, it doesn't mean that I can now live carefree, the worry of cancer returning is still there but just like I would advise anybody else, I will remain vigilant and if I ever have any concerns or worries, then I will go and get myself checked out immediately.

The only thing left for me now is I have to make an appointment at the Imaging Department. This is to have photographs taken of my breasts. I also had pictures taken after my original operation and also after my uplift last year. These photographs are then used to show as an example of 'before' and 'after' to women who are recently diagnosed and about to embark on their breast cancer journey but also expecting to have the same procedures that I did.

Like many women post breast cancer, I am now two years down the line with the hormone drug Tamoxifen. I was dreading taking this drug because I have read that for some women, the side effects are horrendous. The first few months, I had noticeably aching knees to the point that I went to see my doctor who advised me to take Ibuprofen. This aching lasted several months but then subsided to the point that I've not had it since. After reading through threads on the breast cancer forum, the aching joints are a common side effect. Another common side effect is general tiredness and the inability to have a decent nights sleep. I can't decide if the general tiredness is due to the lack of sleep or from the actual medication.

The real bane of my life is the tedious and debilitating hot sweats that I endure several times a day that seem even worse at night. These could also be the reason for my constant lack of sleep and unfortunately, I am unable to take any herbal remedy such as Evening Primrose oil or Sage as they mimic oestrogen and the nature of the breast cancer I had, meant that it thrived on oestrogen.
It can be rather embarrassing (for me) when I'm talking to somebody and I start to get that first flush of what feels like somebody is pouring a kettle of hot water over my head. It certainly isn't a nice feeling to be sweating profusely to the point that sweat pours off my forehead. Luckily for me, most of my friends and family are more than aware of these 'moments' and pass me a tissue!
The 'new me' is now the 'cardigan on, cardigan off' type of person. Every single day!
During and after chemo, I had the 'chemo brain', which most patients endure/suffer. I have since researched Tamoxifen and am more than aware that the side effects are very similar so it is now affectionately called  'Tamoxifog'!

I have always been under the impression that my brain hasn't yet recovered from the chemo as this can actually take years to be completely out of your system and to my joy, I've discovered that Tamoxifen also causes brain fog!

Always one to make the most out of a bad situation, this does sometimes work to my advantage (for instance, when I know I've forgotten to do something).

It is also extremely frustrating. I really struggle to remember if or when I have told somebody something. For instance, I can start telling somebody something and after 5 minutes, I get told that I've already told them. Twice! Or I will start saying something and then can't remember if I've told them so then I say 'have I told you this already?' To any friends or family reading this, does this sound familiar? It is real. Bear with me.

Side effects aside, I am more than aware of the benefits of taking Tamoxifen and for this reason, I'll persevere with them because I'm not too fond of the alternative.

So for now, I have no hospital appointments to attend for the next 12 months and I shall be making the most of weekends, spending precious time with family and friends and deciding on where to travel next.

Debbie

Every cloud

There's no doubt that Cancer has been one of my greatest foes of my life. It is an insidious, pervasive and vicious enemy. And, it is impossible, to misquote Shakespeare, "to take arms against it" as no form of attack will weaken its hold. The death of the talented Rowena Kincaid this week, and the movement of a dear friend to her local hospice only serves to remind us of its power.

However, for the last twenty plus years, I have had another opponent. 

Unlike Cancer which simmers beneath the surface waiting to erode you from the inside with stealth, migraines floor you with a sucker punch and an unrelenting attack. For a while I felt like I was being pounded from all sides and prayed for a miracle.

So whilst I was on high alert for the next Cancer attack, I didn't notice that my migraines had subsided. Not just subsided, but (for now) seem to be completely non-existent. So not only is my Cancer in abeyance, but for the last few weeks my migraines have been too.

I feel like all my prayers have been answered and feel an overwhelming sense of joy and relief, tempered with sadness for those who have been taken from us and those who are soon to leave us.

Thank you to everyone who has been praying for me, and along with the love and support from my friends and family the cloud has been turned inside out. Now, all I can see is the silver.

Amanda     

Insurance for cancer sufferers

Remember that painful advert from a few years back - "Tax doesn't have to be taxing?" (yeah, right....try saying that to the millions of self employed people there are out there...)  well, one of the things that kept Amanda's ever present positivity since she was told she was terminally ill last October was getting one last chance to visit our beloved villa that we're very fortunate to have in Spain. 

As the winter passed and various life rollercoasters were negotiated, we were finally provided with the OK to travel by our local medical team. One thing that many of us take for granted is travel insurance. However, as many with longstanding medical issues will testify to, you're likely to be quoted ludicrously high prices for travel insurance by most insurers.

I'd already done some preliminary research over a year ago before Amanda's situation deteriorated and wasn't overly surprised to find that some companies were quoting upwards to £2,500 for a European 15 day trip. This quote was competitive compared to many, with some insurers even refusing to provide quotes such as was the risk factor that serious medical issues seemingly attract. In July 2015, I saw a Facebook post which had gone viral. In the post, a woman had gone into detail in describing how difficult it had been to try and obtain affordable travel insurance until she came to find out about a company called Insurancewith.  To date, the Facebook post has attracted over 170,000 shares.

So, many months after seeing this post for the first time, I called Insurancewith in April 2016. It took nearly 70 minutes to go through all the details given the complexity of Amanda's medical history (recent and past) and the ridiculously high number of medications that she is still taking. After referral to the medical underwriting team, they were able to offer a policy for cover for a little over £100. Yes - just over £100. I suspect many regular travellers pay more for their two week summer insurance policy than that. They were very patient and understanding throughout the quote process and we were delighted that we wouldn't have bear the brunt of Amanda's medical record. We received a similar quotation for our trip to Spain in August 2016.
Insurancewith started business back in 2007 when professional insurance broker Fiona Macrae was unable to find travel insurance at a reasonable price which also covered her cancer diagnosis. Read more about Fiona's story here.

We've not had to claim on the policy thankfully, but we're relieved that Insurancewith have enabled us to have affordable easily accessible holiday insurance in light of Amanda's pre existing medical conditions.

Also, if you're travelling to Europe anytime soon, make sure you take or obtain your European Health Insurance Card before you travel. It (currently) entitles the card holder to free or discounted medical treatment at state-run hospitals and GPs in any European Union country, plus Iceland, Liechtenstein, Norway and Switzerland. Find out more about it here. 


Dean (Amanda's husband)

The roller coaster of life

The last few weeks have been a roller coaster ride that even Alton Towers could not match. First I lost my brilliant, witty and whimsical Mum. I feel her loss very deeply but manage to remember the many good times, the love and the laughter. In quiet moments I reflect on her life and legacy. At other times my head is so full of thoughts that I feel like they are going to burst out of my ears.

Alongside the lows, as most of you know, I experienced a miraculous high: my great news about my 'upgrade' from 'terminal' to just 'secondary'. I celebrate every day and thank God for the reprieve I have been given.

In addition, we also made a difficult decision this week to clear out my late sister Steph's bedroom; a task that was long overdue. Amongst the precious mementoes were some real treasures, a padlocked diary, a hand-made book of '80s song lyrics and a guide to our top secret 'Butterfly Club' (founder members, Steph's best friend Karen, me and my sister).

So, as always, there have been some beautiful moments, some time for sadness and the slightly receding, but omni-present shadow of cancer.

To paraphrase a well known song lyric, I've been getting by with the help of my amazing husband, extra-special Dad and wonderful friends. Let's hope, to labour the metaphor, that I can remain on track.

A much needed boost

As you would expect, the last few days have been extremely emotional. Mum's funeral is on Saturday and I have been belting out her favourite song, 'I am what I am' by Gloria Gaynor in her honour. With tears pouring down my cheeks, I recall her face and revel in the plethora of memories I carry with me.

It was also a big week for my health as I had an appointment with my brain surgeon. Now good news has been evading me over the last couple of years, but, to mix my metaphors, today was a shimmering ray of hope. Having been told by my oncologist that he was wrong about my terminal diagnosis, this was reinforced by my brain surgeon who smiled as she booked me my next appointment in JANUARY! I haven't unravelled the bunting yet, since I still have secondary breast cancer, the remnants of two brain surgeries and an aggressive cancer waiting to pounce, but it's great news at a time when it was most needed. My terminal diagnosis has even been down-graded to 'secondary' and it has restored mine and my Dad's hope at a painful time.

I feel like it's a major blessing and I am so thankful to God and to my friends, family and well-wishers. Where there is faith there is also hope and for that I am truly thankful.






My special friend,
There are no words to describe how pleased I am at this incredible news. I have said for a long time that you're a walking miracle and would defy medical science. It may have started out as a joke but you've proven me right. Nobody deserves this glimmer of hope after the last 3 years more than you. I am now so looking forward to more special times with you, regardless of how long both of us have left on this earth but hopefully we'll both be around for a long time yet and having rooms in that nursing home may one day become a reality.
Debbie

Sad news

On Saturday, my clever, quirky, brilliant Mum left this world for the next. Known for her off-the-wall sense of humour and passionate beliefs, she has left a big hole in the hearts of those who loved her. An affectionate person with lots of love to give, Mum wouldn't pass a homeless person without giving them some money and she was particularly drawn to life's under-dogs whom she thrived on helping. Fiercely loyal, she was also very thoughtful, and birthdays and Christmases were ideal opportunities for her generous present giving. 

Sadly, however, her life was blighted by my sister's death and she never recovered from this agonising loss. Steph and Mum were like kindred spirits and loved animals and sunny days. They were just happy to be in each other's company. Without her, life was difficult, and we tip-toed through debilitating periods of sadness and frustration.   

Despite this tragedy though we had many treasured times including lots of holidays where we mostly laughed like drains at our family's in-jokes. We particularly loved Spanish holidays where Mum would be happy dangling her feet in the pool and enjoying the sun on her face. Moments to be treasured.

At times a force to be reckoned with, at others a fragile soul, wearing her heart on her sleeve, she was a complex person with a storming intellect.

My world will be significantly the poorer without her.  

Alternative therapies - guest blog

This is a guest blog from my friend, Jayne, who is currently buzzing round Europe in a camper van with her husband, Mark. She has been trying a variety of holistic treatments to treat her secondary breast cancer. She has kindly allowed me to share the latest leg of her journey with you.

I've decided to do this general update to all of you as so many of you have asked for details of my treatment and the results.

I chose to go to the Klinik Marinus am Stein in Brannenburg, Germany, (look it up online: awesome place!) Their cancer therapy is gentle and adapted to the patient’s requirement for the best quality of life possible, by means of medical intervention in the growth mechanisms of the cancer cells without damaging any healthy cells.

I had chemotherapy three years ago so I know what is involved and in light of being informed that I can no Ionger be cured, then I wanted the least invasive treatment possible to enable me to have some quality of life during the time I have left. I started treatment at the clinic on 20th May 2016 and finished on 12th June.

During that time I had local hyperthermia in conjunction with the cancer restraining medicines, Artemisinin, Buserelin and Thymus Peptide alongside Mistletoe injections. I also had Selenium and Ozone blood drips along with Magnetic Field, Bio-mat and Oxygen Therapy. I was also taking lots of vitamins, minerals and probiotics daily. After all this I still had time each day to walk or ride my bike, to climb a mountain or swim in a waterfall. I wouldn't have been able to do that after chemo!

At the clinic they monitor the progress of your treatment through blood tests and look at two different tumour markers:
CEA (general cancer) down from 70 to 42
153 (breast cancer) down from 504 to 349
Amazing results but both should be below 40 so I've still got some way to go!

The clinic gave me lots of medication to take away with me. Mark said we needed a trailer behind the van just for my drugs! The Doctor there thinks our road trip is a great idea and says it’s just as important to 'love the life you live' as the treatment itself. I do have to get regular blood tests to keep an eye on things and may end up having to interrupt our travel plans to go back to the clinic for more treatment at any time.

Before leaving for Germany I also visited the Penny Brohn Cancer Centre in Bristol and was advised by their Oncologist to read the following books, both written by Doctors, which I found very inspirational:-
Radical Remission, surviving cancer against all odds by Kelly A Turner PhD and Anti cancer, a new way of life by David Servan-Schreiber. 

I am telling everyone about these books and in light of the prediction that cancer is going to affect one in four of us, I urge you to read them. It's too late when you or someone you love is diagnosed because your 'head is a shed' and you just won't have the time to take it all in.

Since leaving the clinic we have travelled through Austria and Italy and we are currently in Caravigno, near Ostuni, Southern Italy doing a house-sit for six weeks in a converted olive store looking after eight dogs! We've got olive, almond, fig, apple, peach, pear, plum, quince and mulberry trees in the grounds and it's remote and rustic and fab!

This is only day 45 of our year out and we have already seen some awesome places and met some amazing people who I know will be part of the rest of our lives. I don't know if this treatment will succeed over the cancer or not but I'm going to continue to give it my all. Either way, I will never regret this decision because I'd much rather be swimming in the ocean, or sleeping under the stars, climbing a waterfall or mountain or swinging in a hammock under the olive trees than hooked up to a drip in a hospital on chemotherapy feeling too poorly to enjoy my life.

I hope all is well with you and yours, be happy and see the beauty in every day.

Jayne

Health update

As documented in this blog, over the last few weeks I have had a number of hospital appointments to chart my progress. The first appointment was with my oncology team. My specialist is one of the top oncologists in the country and we were lucky to secure an appointment with him. I had not yet had my scan, so there was little evidence to digest, however, he was pleased to see that I was looking healthy and commented that he was happy to be wrong with his "months not years" prognosis (which has already expired).  

That's only part of the picture though. 

The other team I am under the care of, is the brain team. My surgeon is a highly talented brain tumour specialist who orders periodic scans to monitor any changes in my brain.
As my cancer is a "secondary" to the brain, this means that it has spread beyond its original location (the breast) and is made up of Triple Negative breast cancer cells that happen to be in the brain*.


A key characteristic of this type of cancer is its rate of growth. Most Triple Negative breast cancers are grade 3, the most aggressive kind, and have an extremely high likelihood of coming back very quickly. This is partly because the hormonal treatments don't work. In other words, a Triple Negative breast cancer diagnosis means that the tumour is negative for oestrogen receptors, progesterone receptor-negative and HER2-negative. That's why it's called "Triple Negative" breast cancer.

*Most cancers have a usual journey through the body and breast cancer cells are more likely to spread to the lymph nodes or the liver. Less common is a secondary tumour or tumours in the brain as I have. Mine moved from the breast (discovered in November 2013) to the brain ("secondary" diagnosed in May 2015) and I was diagnosed as "terminal" in October 2015. 

So where am I at?

For now I'm OK. If the scan is clear that is fabulous but temporary news; the oncologist has warned that the tumour is highly likely to come back sooner rather than later. If it's not clear, then we need to explore the options for further surgery. 

So, I'm taking each day as it comes. If I get a further reprieve, I will squeeze in as much life as I can, as life is SO precious. I don't intend to waste a second of it.

Amanda

Rant alert

I read with interest this week, the coverage of Noel Edmonds talking about cancer and negative energy (read more here >>> http://www.bbc.co.uk/news/uk-36470979). Whilst everyone is entitled to their opinion, I was saddened to hear his views. What upsets me is the implication that I am in some way responsible for my cancer. I have been tee-total and smoke-free all my life, been pescetarian for the last ten years and always been fit and healthy, exercising regularly. I've also been a person with a great deal of positive energy and a strong faith. So I find it very difficult when people attempt to attribute my illness to "lifestyle factors" or attitude.

The fact is, that only half of us will survive cancer for ten years or more. It's ridiculous to hypothesise that only those with a positive attitude will make it. Early diagnosis, aggressive treatment and sheer good luck are the real influencing factors in determining which half of us will make the cut. There was nothing I could do to avoid having terminal cancer at 42. All I can do now is be grateful for every laugh, every prayer, every moment with a friend. I may not make it to the ten year mark but I sincerely hope to be lucky enough to enjoy what time I have left.

Amanda

Race for Life

Tuesday night was an emotional one for me. It was the Race for Life 5k at Trentham Gardens. Two years ago I went to the same event. I had about three small tufts of hair on my otherwise bald head and was unsteady on my feet. Some women clapped me as they passed, but most notably a complete stranger came up to me and squeezed my hand. I was so moved that tears were rolling down my cheeks.

Yesterday was equally emotional. I was struck by the women's strength and power as they flew past me to the finishing line. I was also swallowing back the tears at the complex web of love, friendship and remembrance that surrounded me. A little girl was wearing a T-shirt with her late Dad's face on it and others had several names on their backs. Everyone was dedicating their efforts to someone.

Most of all I was struck by the sense of camaraderie that the event created, not to mention the amount of money raised. I also had a fleeting thought that next year in all likelihood I would not be there and I would simply be a memory pinned to the back of one of the runners.

Well done to everyone who took part in this extra special event.

Amanda

Do not worry about tomorrow for tomorrow will worry about itself

Periodically over the last few weeks, I have had some bouts of sickness and some dizziness, coupled with the most hardcore sleeps. There's no immediate cause for alarm, however, it's difficult not to let the occasional worry slip in. Being terminally ill is an odd concept. You're still you, feel like you and are prone to everyday concerns like you always were. But there is now an extra dimension to the worries.

So I have two ways of allaying my fears. The first is the medical route. I have an oncology consultant and a surgical team investigating my progress and have appointments with both coming up. The surgical team are the more optimistic of the two and once I have my scan results, they will decide whether (a) I am in the same boat as the last scan - a wonderful option with no further action at this time, or (b) there have been some changes to my brain and there is a new/enlarged tumour which will need action (perhaps more surgery, possibly cyber-knife).

With this route, I will have all the facts at my disposal and there is something reassuring about knowing what's what, whether it's good news or bad.

The second route (which is concurrent to the first) is about relying on a powerful combination of faith, hope and love. My faith will guide me through, regardless of the outcome, I will never lose hope despite the bleakest of prognoses, and the strongest of all, love. The love of my friends and family lifts my spirits and for that I am truly thankful. So for now I won't waste precious time worrying, and instead be grateful whatever happens.

Amanda  

P.S. Please pray/hope for option (a)

It's the 3% that worry me

An unusual birthday

This week I celebrated my birthday. Now, my usual 'modus operandi' is to engage in as many social occasions as possible and extend my birthday for as long as it is seemly/practical to do so. I love everything about the day* from the birthday cards and presents through to the Facebook greetings.

*week and a half if I can get away with it

This birthday was, as you would expect, a little unusual. I was away for a start. This gave me the sensation of doing things differently to usual; the weather was lovely and we enjoyed a couple of nights away. There was little time for reflection and lots of time for hotel breakfasts, seaside walks and lots of laughs.

But there was also the awareness that this, according to expert medical opinion, would be my last birthday. It's hard to imagine this as generally I feel pretty well (apart from an irritating cold over the last few days). I'm still suffering from forgetfulness, seizures (although these are under control with medication), mental impairment and my confidence in a Samson-stylee seems to have been lost with my hair. *HAIR UPDATE* Quite frankly it looks hideous. It's an inch and a half long, you can see my scalp through it and it curls up into mousey brown frizz if I am in contact with any type of moisture. Plus my cheeks are in overdrive to compensate.

However, I genuinely feel like I'm going to make it to my next birthday. If I don't then that's OK. I've been blessed beyond belief. But many of my fellow cancer chums are still in the game, so as long as I keep opening my eyes each morning, then that's got to be a good thing.

Amanda

Embrace the wrinkles, others would be delighted to have them

Support Groups

Receiving a cancer diagnosis is more often than not (personally speaking) a complete bolt out of the blue and can trigger a strong emotional response. Some people experience shock, anger, and disbelief. Others may feel intense sadness, fear, and a sense of loss. Even the most supportive family members and friends cannot understand exactly how it feels to have cancer. This can lead to loneliness and isolation.

Support groups allow people to talk about their experiences with others who are living with cancer or who have come out of the other side after finishing treatment for cancer. Group members can share feelings and experiences that may seem too strange or too difficult to share with family and friends. And the group dynamics often create a sense of belonging that helps each person feel more understood and less alone.

Support group members may also discuss practical information. This may include what to expect during treatment, how to manage pain and other side effects of treatment, and how to communicate with health care providers and family members. Exchanging information and advice may provide a sense of control and reduce feelings of helplessness.

Groups may also be designed for specific audiences, including:

·         All individuals with cancer

·         People with one type of cancer, such as breast cancer or prostate cancer

·         People of a certain age group

·         People who have a specific stage of cancer

·         Caregivers, such as family members and friends

You may not be interested in joining a support group or find that support groups are not helpful for you. I did not want to join a support group when I was going through my treatment, I wanted to get my treatment over and done with and didn’t feel like I wanted to talk to people I didn’t know. For me personally, the best support was talking to people I already knew who had been through a cancer diagnosis. And of cause, my very best support came from Amanda. She was always at the end of the phone whenever I needed her and I was for her too, even if it was to just have a moan (which we did often).

It was only through meeting another lady through a mutual friend, who had also had breast cancer that I started to think about a support group. The lady in question decided to set up a breast cancer support group which is incidentally, the only one of its kind in the area that Amanda and I live. 

Breast cancer survivors bring personal experience to support groups they organize. For example, a cancer survivor can help those who are newly diagnosed know what to expect. But because many breast cancer survivors have not had support group skill training, they may not always know how to respond to difficult group situations. At the same time, even without official training, people who've had breast cancer often have enough life experience.

The meetings I now attend are once a month and I have met a wonderful group of ladies who are at all different stages since being diagnosed with breast cancer. Some ladies are a few years down the road, some are still having treatment and some only needed an operation and no follow on treatment. Sadly, some now have a secondary cancer diagnosis and some now have terminal cancer.One thing we all have in common though is that we were all diagnosed with breast cancer.

For me, this support group is now a place where I can go and we can chat about our hopes and our fears because once you’ve finished your treatment and started to make the slow recovery to your ‘new normal’, most people will find that family members and friends very rarely mention your ‘cancer time’ yet for us who’ve been through it, we still live with it every day. The group of ladies who I meet up with every month all know exactly how I feel because we’ve all been through the same experience and no matter how good friends and family are, they will never know or be able to fully understand how we feel.

The support group that I go to also has something going on every time we meet. For instance, we have had representatives from the Douglas Macmillan Hospice, we have had a doctor giving a talk on mammograms and how they determine who is recalled etc. We have also had ladies there who offer massages and therapeutic treatments so every monthly meeting is different. The one constant at every meeting is that we have tea and cakes so that's got to be worth going for...

If you’re still having treatment and don’t really want to consider joining a support group just yet, then consider these other sources of support:

·         Talk with a friend.

·         Get individual counselling

·         Ask a doctor or nurse specific questions.

·         Participate in activities that you enjoy and that allow you to connect with friends or family.

Whichever form of support you decide to choose, it will be what is right for you.

For more information on the support group available in Stoke on Trent:

http://www.pinksisters.co.uk/

Debbie