Ode to the big ‘C’

“It’s back” he said, and my heart sank;
Without the slightest warning 
The big ‘C’ had come back for me
Just when new life was dawning

The hair was tough and once again
The hamster cheeks appeared
At least I should be grateful that 
I didn’t grow a beard

It started with confusion 
And a modicum of fear 
An egg-sized tumour grew at speed
As did my growing fear

The radio waves were pretty grim
The side effects horrific
I lost myself for quite a while
Whilst the cancer became prolific

So in eight months my life has changed
Beyond all recognition
But even after all this pain
I still retain ambition

I dream of sun and ochre skies
Of the lapping of the sea
Then I recall that despite all this
I’m actually still me

I still have faith and still have hope
My mind is just as free
Surrounded by love and friendship
Where would I rather be?

So I won’t be sad or lonely
In this life or the next
In fact I’m hugely lucky
My life has been the best
   
It’s been chock-full of laughter
Of blessings and of love
And for this I am grateful
To the Lord above

So when I’m gone, remember me
As someone full of joy;
Of happiness and gratitude
For all that I enjoyed

Thank you for being a precious part of it.

Amanda

Soul searching for beginners

As written in previous blogs it was blatantly obvious that Christmas 2015 for our family was going to be extremely difficult and very emotional. This proved to be the case, but somehow we got through it. Amanda wasn’t well in a number of ways leading up to Christmas Day, but with her typical determination, tenacity and willpower she fulfilled every obligation, and I personally know why she intended to do it.

On the big day we managed to achieve our traditional Church visit/taking of wreaths/present opening etc. and of course Christmas dinner. To me though, the best 2015 Christmas present I received was that God allowed me to spend another Christmas with Amanda, and I thank Him with all my heart for that. Amanda has said that she doesn’t like the word ‘brave’ when connected to dealing with cancer, however, believe me when I say she is incredibly brave and has handled these last two horrendous years with such amazing dignity.

What 2016 will bring is anyone’s guess but I still hope and pray that God will bring her back to the fullness of health. Amanda has suggested that counselling may be of some assistance to me,
so I’m giving it a try. My counsellor is very good, but sometimes soul-searching can be painful, particularly when you’ve had one or two very tough past experiences to deal with your earlier years. But maybe it’s good to get them out in the open and talk about them? As I said in my first paragraph…not my natural style.

We’re still taking every day as it comes, but some days [and nights] can be really dark and foreboding. Having a daughter with cancer isn’t like it can sometimes be portrayed on TV and films, it is absolute torture to see them in such pain and so troubled, but I still feel incredibly blessed to be Amanda’s Dad, and I will always feel that way until my very last day. Amanda hates the way she now looks, but to me she will always be absolutely beautiful inside and out!

Amanda's Dad

Cancer language

Friday 15th January 2016

After reading the tributes to those celebrities who have recently died of cancer, I am beginning to feel that the language we use for such a complex subject is woefully inadequate. Everyone's experience of suffering from cancer (and this includes the family and friends of those who are going through it as well as the patient themselves) is completely different and yet there seems to be a universal and very tired language that we all use to describe it.

As I've blogged before, I don't like reading about someone 'losing their brave fight' when they have no choice over their fate or their outcomes. In fact, 'battling cancer' requires the opposite of a fight. In many cases it's far better to concentrate on your emotional, spiritual and mental well-being rather than taking up arms fruitlessly. 

So, what I'm suggesting is that that we try to shake up the language of cancer a little to add some greater depth to important discussions. Let's find a different and more meaningful way of describing the experience of cancer and everything associated with it: the pain, the sadness, the loss of identity, fear and of course, hope. Let's describe those who are living with, or have sadly died of cancer as the individuals they are using language that shows what a unique contribution they have made to the world and people around them.   

Amanda

Emily McDowell

Christmas and New Year update

Thursday 31st December.

Dean here. I've never been one to get carried away about 'celebrating' New Year. It's just another night, right? I saw a status on Facebook earlier this evening which hit the nail on the head quite decisively. 'The stroke of midnight will change absolutely very little. Here's to false optimism & inevitable disappointment'.

Things haven't been easy this Christmas. Amanda's been fighting an infection since Christmas Day which resulted in sickness, a really bad cough and general restlessness. Medication has eased the sickness and cough and now we're just waiting for new medication to relax Amanda is the evening kicks in. My mum was admitted to hospital 21st December suffering after her first chemo too (UPDATE - mum was discharged from hospital on 2nd January 2016).

On a more positive note, we were delighted to receive a cheque for £1,500 from one of the local pubs near to where Amanda and I live. The Red House in Caverswall hosted their annual clay pigeon shoot and were kind enough to donate proceeds from this year's event to Amanda's three nominated charities. We'd like to place on record our extreme gratitude to all the guys at the Red House for their amazing generosity. If ever you're visiting the Stoke area, please stop by: www.the-red-house.co.uk

As a result of this, we've now raised over £8,500 towards the three charities. With more fundraising in early 2016, we're hoping to smash the £10,000 target very quickly.

Thanks all.

Dean 

And a happy new year

I am greeting 2016 with mixed feelings. On the one hand, I am at peace with what's happening to me and my family. On the other, I see the sadness in the eyes of those I love and it is truly heart-breaking. So, as Christmas ends and the New Year begins, I thought would reflect on what it's really like for those who are facing terminal illness.

Since I was diagnosed with an aggressive breast cancer in November 2013, life has been very different. I've had surgery to remove the original lump, then radiotherapy, then chemotherapy. Then, when my body was just about recovering; I had a bit of hair, regained my work skills, rebuilt my fitness and started to move onto the next chapter, the cancer came back in the most dangerous of places...my brain. So the whole rigmarole began again with its own special brand of torture: two lots of brain surgery followed by a punishing schedule of radiotherapy. I lost my hair (again), swelled up like a helium balloon (again), and lost many of my faculties.

But despite all of the unpleasantness I'm still here. Whenever this ends, I can genuinely say that I am grateful for so many things. My phenomenal parents, husband, friends, colleagues and clients have quite simply shone a light through the darkest of times. For that I will always be grateful. And I mean more grateful than you will ever know. 

Too numerous to mention are the plethora of thoughtful gifts, flowers and untold kindnesses you have selflessly shared with me. I have, on many occasions over the last few months, laughed until my belly ached, cried and adored reading messages and letters from people from all areas of my life. Would I change a thing? Aside from the rubbishy cancer bit, then absolutely not. 

Happy New Year from Amanda

Trials and tribulations

Tuesday 22 December

As endurance tests go, 2015 has certainly made its mark.

Back in 2014, after a year which had seen Amanda go through aggressive chemo and radiotherapy for her breast cancer and, right at the end - on December 20th to be precise - my dad fell over at home and broke his hip. We thought then what a particularly unwelcome year 2014 had been.

Amanda's own journey throughout the year has already been well documented on this blog, and for the time being, she is as well as can be expected (see her latest blog update here from 21st December 2015: http://ukbreastcancertips.blogspot.co.uk/2015/12/its-christmas-time.html )

Dad has been in and out of hospital three times throughout 2015. There were huge problems with his post operation recovery - a particularly nasty infection didn't help things leading him needing to have a replacement half-hip. Dad's issues have been compounded along the way with his Parkinson's Disease. In fact...and get this...in August, he had to have the ball joint at the top of his hip removed. This was because his Parkinson's Disease was causing his ball joint to vibrate so violently against the ball socket. The ball joint has been cemented to the hip bone, causing his right leg to be three inches shorter than the left. Dad came out of hospital in September and is very slowly recuperating. He's had two special shoes made with a platform sole (just like the ones he used to wear in the 1970s no doubt) which stabilises him. He can shuffle around downstairs in mum and dad's semi-detached with the aid of a walking frame and we're hoping that the recent introduction of a stairlift will give him a little more independence to get around the house and partake in crazy high speeds stunts upstairs too.

My mum visited dad every single day he was in hospital throughout the year, however this took its toll in an incredibly difficult to understand manner. A month after dad's discharge, mum started to feel the pace, she found it increasingly difficult to help with the day to day looking after of my dad at home, despite the daily visits from our local social services care team. Mum's started to get breathless slightly more (controlled and..as it turns out...masking some conditions...by an inhaler). In November, we noted quite a considerable weight loss in a short period of time. It's not good news for my mum unfortunately. We've learned she now has advanced lung cancer which has spread to the liver and bones. She started chemo treatment very quickly (December 15, 2015). Despite three relatively good days post-chemo, she's since been admitted into the Cancer Centre suffering from a high temperature and infection. My sister is struggling right now as she has a pretty bad cold which means she can't get to visit either mum or dad due to the risk of infection - as mum's blood count is low due to chemo, she's far more susceptible to catching colds and the like and my sister cannot risk visiting.

Dad was in hospital on for a while on Christmas Day 2014, and although we're hoping for the best, there's a good chance mum may well be there too this coming Christmas Day. ((Update 22nd December 5.03pm Confirmed that mum will be in hospital for Christmas Day)

Mum (76) and dad (78), until fairly recently, have enjoyed healthy lives, and as most sons and daughters who have been lucky enough to have had their parents around for this amount of time as we have, will testify that they like to see their parents as the most loving, strong people you could ever have in your lives. Things won't ever be the same again.

Amanda mentions on her blog  about the whole 'brave' issue when referring to cancer. I came across this story very early today when prepping for this blog update and Heather's words put the whole "cancer" thing to bed quite nicely. "And don’t say I lost to cancer. Because cancer may have taken almost everything from me, but it never took my love or my hope or my joy. It wasn’t a “battle” it was just life, which is often brutally random and unfair, and that’s simply how it goes sometimes. I didn’t lose, dammit. The way I lived for years with cancer is something I consider a pretty big victory."

As a sidenote, mum has been referred to the same palliative care team at our local hospice that Amanda has been referred to. Cancer - it just keeps giving, doesn't it?
Christmas 2015 for me? Bah humbug.

2015 dealt us some pretty rubbish news all the way through. I worked out I visited hospital every single calendar month. 2016 will be worse. We're treading water right now balancing everything between us with all the demands being thrown at us left, right and centre.

***********

Update - I mentioned in a previous blog entry ( http://ukbreastcancertips.blogspot.co.uk/2015/12/ebay-auction-of-collectable-shoegaze.html) that an auction was taking place to raise funds for our local hospice that is providing support to Amanda (and now my mother). I genuinely didn't know how much the auction would raise. £50? perhaps even if we were really lucky £100?
Through extensive sharing on Facebook & Twitter, Richard - the auction host - was able to get over £250 for the auction, which in my eyes is pretty stunning work. The winner even paid an extra £50 to the auction, so with Gift Aid factored in, that's £382.50 raised for Douglas MacMillan. I've never met Richard, but hope to do so next year when some of our musical heroes meet up for their first gig for 20 years, but I can't thank him enough for what he has done in helping raise money for our local hospice.

It's Christmas time...

So, it's very nearly Christmas and I am SO excited. Festivities were kicked off with a beautiful candle-lit Carol concert at my church, St. Lawrence's, on Sunday evening, and I spent lots of precious time with friends and family over the weekend. In particular you'll be pleased to hear that I am now on first-name terms with everyone at my local spa.

In other news, after a torturous wait, I have now developed actual hair. I still have an inverted Widow's Peak and local children get excited when they see me, as my cheeks are still the size of two miniature bean bags, but things are slowly improving. It has at least been a good lesson in humility and patience (neither of which I am famed for).

Things have been also been tough for the family over the last few weeks, especially for my lovely mother-in-law who is having debilitating cancer treatment and is currently in hospital. I've always hated being called "brave"' but I can see now from a different perspective how strength and sheer will is guiding her to be strong for us when it's the last thing she wants to do. I hope and pray that she's back out of hospital for Christmas.

Amanda