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)