Tuesday, 22 December 2015

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.


Monday, 21 December 2015

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



Wednesday, 9 December 2015

Ebay auction of collectable shoegaze treats

Wednesday 9th December

As many of you who know me will testify, I have an unhealthy, obsessive passion with a niche musical genre known as 'shoegaze'.

What is shoegaze? Take a look at this concise description(s) from Urban Dictionary


One of my Facebook connections, Richard Lewis,  who I've had plenty of dealings with over recent months approached me a while back with a suggestion that he gets a few bits of hisprized memorabilia signed by shoegaze legends Slowdive . Yes THAT Slowdive....

Over the course of the last few weeks, and capitalising on a few days when the band were all together recording somewhere in the deepest, darkest recesses of the West Country, not only was able to secure the much sorted signatures of all the band members, he was also very kindly able to secure some goodies from Slowdive which the band have very kindly autographed too. While it's not going to raise as much money as a toenail from one of One Direction (at least I don't think it will, who knows for sure?), the package that Richard has been able to source will be of considerable interest to all shoegaze fans out there and contains so much of interest to collectors:


The vinyl is unplayed, It's graded as  Excellent condition and it will be supplied with a wrap-around proof sleeve, too. The white card cover has a couple of bends, so will grade it at VG.The Ride/Slowdive split 7" is on blue vinyl and is in excellent condition, the thin paper cover is quite creased so graded it as VG.”  Both the 7" and 12" vinyl are reservedly graded.

This auction runs through to 19th December 2015 at 6.01pm UK time. Take a look at the auction via the Ebay page here >>> http://www.ebay.co.uk/itm/-/291635325996

Richard has agreed to donate all proceeds of this Ebay auction to the Douglas MacMillan Hospice, who are already providing much needed support to Amanda and myself and will continue to do so however long our journey goes on for. Seeing as I've never met Richard before, this is an incredibly generous thing for him to do and we pass on our eternal gratitude. Richard - you're a fine, fine person.

If you know anyone who would be interested in bidding for this highly collectable package, please share this blog post with them.
Many thanks for reading

Dean (Amanda's husband)




Monday, 7 December 2015

Going to the chapel...

Today was a super special day. As a complete surprise, and with a lot of help from Charlotte, Kath and Cecilia, Dean and I renewed our vows in Exeter College Chapel this afternoon. 

It was an incredibly poignant and unforgettable service, made all the more special by the resonance of our promises to each other despite the circumstances. In spite of the sadness of today, it was also really uplifting and reminded us how lucky we are to have found each other.

https://www.facebook.com/pageforamanda/



Dining Hall at Exeter College - the 6 of us had a fantastic meal from the balcony where this photo was taken. Looking towards the top table where we were sat during our wedding breakfast in 2010.

The Chapel, Exeter College, Oxford.
Married here 24th July 2010
Renewal & blessing of our vows here 7th December 2015

The rather splendid interior of The Chapel, Exeter College, Oxford

Christmas decoration high in the sky in The Chapel, Exeter College, Oxford
Amanda

Friday, 4 December 2015

There's no better time to expect a miracle than Christmas

I wasn’t expecting to write another blog so soon after my last one, but I was so upset after reading Amanda’s blog last night that I felt prompted to respond in some way. Amanda is being so incredibly brave under such extreme circumstances, but to see her put in print that she is expecting this to be her last Christmas is unbelievably painful. I hope and pray with all my heart that it isn’t, and I’m asking God for a miracle. As a family we deserve one! As Amanda says [and our counsellor], we need to live for the moment and not to look into the future as no one knows what that it holds for us. The bible advises us not to look too far ahead, and I can truly understand why it does. Christmas Day has always been so special for our family, and this one will definitely be no exception. Last year was the very first Christmas that we’d spent away from home. Amanda and Dean had decided to spend Christmas at their villa in Spain, and we decided to join them. We had a brilliant time, and I haven’t given up hope of doing it again. Amanda and Dean have always adored their time there, and to join them again in the future would be incredible! I believe that we will! This Christmas Day will be our usual family Christmas Day. My wife and I will spend Christmas Eve putting the presents out in preparation for the big day; and Amanda will have the most presents, filling the settee as usual. Christmas morning will be a full English breakfast followed by Amanda and I going to church. After taking wreaths to various cemeteries in the City, we then get home to a present opening ceremony with lots of laughing! Christmas dinner carefully prepared by my wife will be enjoyed after certain traditional speeches are undertaken. We’ve always done this, and always will, its great! My previous blog emphasised the need for doing the simple things as you would normally do in tremendously difficult times, and this Christmas will follow those advisory guidelines, albeit this year in a very emotional way for our very, very special daughter.

Amanda's Dad



Thursday, 3 December 2015

And so this is Christmas

As my last Christmas looms I'm actually really excited, despite the circumstances. There is so much that I love about Christmas from Christingles to Carols, that I'm actually really looking forward to it.

However, this is likely to be a really challenging time for my family and friends, and each moment will be precious, if bitter-sweet. So what are my tips to make this Christmas an extra special one? 

Firstly, the plan is to have as 'normal' a Christmas as possible. The best Christmases have always been the simple ones. We've got loads of traditions we follow as a family, from going to the cemetery to going to the Christmas day church service. These are very precious to us and none moreso than this year. 

We're also going to share experiences rather than give presents. I'd much rather add some more special moments to my over-flowing memory banks than to accumulate more 'stuff'.  

It will also be a time of reflection that my life, albeit shorter than anticipated, has been wonderful in so many ways. So, this Christmas will be no different than usual, full of love and laughter and I hope yours will be the same. 

Amanda



Tuesday, 24 November 2015

Guest blog from Amanda's dad

The last couple of years have been extremely challenging, and my life has changed so dramatically since hearing that Amanda may only have a few months to live.  I really can’t accept that thought or take it in; hence I still hope and pray constantly that she will make a complete recovery.  Over the last few weeks there have been various celebrations of Amanda’s life, initially at our church, and more recently at an event at a local restaurant which included a celebration of her successful business career.  Although these were tremendously uplifting events, in other ways they were quite painful.  It can’t be right that a parent should have to deal with such experiences like these; it isn’t in the correct order.  The knock on effect of Amanda’s condition on me and my wife has been massive, almost unbearable, particularly since our youngest daughter died after contracting meningitis at the age of 15 years.


I certainly can’t tell anyone how to cope with something like this, as I guess that everyone deals with things in their own individual way.   Amanda and I are having counselling, but I’m not very good at ‘opening up’, I don’t think that many men are.  Amanda seems to handle every situation better than most, even the counselling.   A friend of mine advised me to try to do the everyday simple things in life that I would normally do, and that seems to work for me.  I speak to Amanda at least once every day [as I always have done], and we meet up whenever possible for a walk/ chat /and something to eat.   I really cherish those times. I think it is also important not to have any regrets regarding relationships, and to let people know what they mean to you.  I’m 100% sure that Amanda knows exactly what she means to me!


Whatever happens in the future I feel so lucky and privileged to have had two absolutely wonderful daughters, and I have loved being a father and always will, it seems so completely natural to me. 


Amanda’s had tremendous support throughout this incredibly traumatic period from her family and friends, and no doubt will continue to do so.  At times like this I think that you get back from relationships what you have put in. Perhaps there is a lesson there somewhere?



Amanda’s Dad.

Friday, 20 November 2015

Needles and bins

Friday 20th November.

Update by Dean, Amanda's husband.


So now that the flowers, chocolates, 'celebrations of life' events have passed (that isn't a plea for more flowers and chocolates by the way....), I thought I'd type up a few words on our day-to-day life right now.

So how is Amanda, first of all?

Well, it's been just over 4 weeks since we find out Amanda's condition is now terminal. Here's the blog post I penned back on 22nd October if you need a reminder. http://ukbreastcancertips.blogspot.co.uk/2015/10/knocking-on-heavens-door.html


Surprisingly, Amanda is actually slightly better now than she was that day. Admittedly, we're a month closer to the end of her journey, but then again, doesn't that apply to us all? Around the time we were told the news, Amanda wasn't on her Dexamethazone, which is controlling the swelling to her brain and she was feeling particularly bad. The reintroduction of this steroid, although not ideal, has kick started her metabolism again and she's been able to participate in lots and lots of social appointments - she wouldn't have it any other way.

The daily routine is what we think may be similar to parents looking after their children in many respects. When she wakes in the morning, I make her some breakfast, which involves a perilous trip to the kitchen and familiarising myself with previously unknown kitchen equipment, such as these things called "knives", "forks" "spoons" "dishes" and..would you believe..."food". A marvellous creation.


There then comes the first part of her medication intake for the day. Currently this consists of 5 tablets, including the Dexamethazone, the anti-sickness drug "Cyclazine" and Kepra, which was introduced into Amanda's daily drug regime back in August when she started to experience seizures when in hospital. She needs these permanently now. After these 5 tablets, there's the main course, albeit main course is normally something to enjoy. This is far from enjoyable though as I have to inject Amanda with the blood thinning medication called Daltaparin. This is a requirement since Amanda was hospitalised back in mid-October with, what it turns out to be, two blot clots on her lungs. A reminder about that episode here: http://ukbreastcancertips.blogspot.co.uk/2015/10/home-again.html

So while the injections were performed by the fabulous district nurse team on home visits for a while after discharge from hospital, there comes a time - just like a diabetic - where you have to self-administer. This involves a daily injection to the abdomen area either side of the stomach. Pinch the skin, insert the needle ("You'll feel a sharp scratch"...which when translated into what it really means...actually means "this is going to cause you more discomfort of stubbing your little toe by the edge of the bed, or worse still, standing on discarded Lego bricks"), inject the fluid to to its blood-thinning trickery, and withdraw the needle. You even get to pick up your own "sharps disposal" box for discarding the used needle safely. Wonder what the neighbours think as we have our sharps box on proud display on our living room window ledge.


So after the hectic morning schedule, it's fairly straight forward for the rest of the day.
There's currently one further anti-sickness at lunchtime, a combo of anti-sickness and anti-seizure late afternoon and one final tablet in the evening of Haliperidol. While the main reason for taking this one is to block off certain chemicals in the brain, Amanda's friends will be entertained to hear that this particular drug can also be used to control symptoms associated with Tourette disorder, something that Amanda has had difficulties managing since she was a child....said no one ever.

The rest of the day for Amanda is spent either catching up on Judge Judy, catching up with friends or resting. I pretty much have to follow her round everywhere as her memory isn't as razor sharp as it once was. I manage Amanda's social calendar with strict, military precision and have to repeat her daily itinerary to her several times a day as her ability to logically schedule things and recall details is impacted now. I send her text messages, Facebook Messages on demand. I make the bed in the morning, I'll help her open post, especially the never ending stream of gifts we're getting. I'll sort out tidying, cleaning wherever I can too. I'll drive her to/from appointments. There's lots to do on a daily basis before I've even done the usual stuff, wash/dry dishes, washing, cleaning, putting the bins out etc etc etc. We still have time to laugh throughout the day. You must ALWAYS make the time for that.

I'm not known for my legendary powers of patience, but along this journey, there's become a requirement to not get irritated at repeating things over and over. There's a certain sadness and inevitability that this condition is chipping away at Amanda gradually. Chillingly, the eventual outcome to all this is never far from my mind.

So earlier, i touched on how Amanda is generally. She's well. there's times when she'll be talking then will completely forget what she was talking about. A little push in the direction of the last moments of her conversation before she forgot is usually enough to steer her back on track. She has involuntary spasms with her hands which are more noticeable than before. It painful reminds me of my dad and his ongoing battle with Parkinson's Disease. Amanda is able to walk short distances. We're not talking the ability to walk a couple of miles around our local lake any more, but a 800 yard round journey to our local garden centre estate is enough right now.

We're heading away for a week this weekend. Complete with enough medical supplies to keep aa small country afloat for a week. Swimming costumes at the ready too - as all places we're staying have access to indoor spa facilities, just the thing required with the forecast weather in the UK over the next few days. We're very much looking forward to a bit of down time, quality time with each other.

Hope you've enjoyed the insight.





Wednesday, 18 November 2015

Song for whoever

Wednesday 18th November
It's Dean (husband of Amanda) here.

I have a story about the video that I've linked to further down in this blog.

This particular record cropped up on my Facebook a couple of days ago after Amanda's event on Sunday. Jo & Akira (Flying Cape Experience) tagged me into the post via their own Facebook profiles. They wrote the following:

There will come situations in your life that you are afraid of.
Situations where you feel desperate, devastated, heartbroken. Situations you can't do anything about. You just need to accept what is about to come. But you do your best, everything you can, because you have hope and faith, because of love.
And sometimes there comes situations when you just have to say goodbye.

This new song is dedicated to a brave couple. They have shared their life story, love story, which is heartbreaking but hope giving. Their openness, optimism and love is the reason this song was born. The celebration of life. They are the mother and father to this song.

As many of you will know, Amanda​  doesn't quite possess the intensity of musical love that i have. I mentioned that to her that they had dedicated this song to us. I sat down next to Amanda and played it on my iPad. Bear in mind I hadn't played it in advance, listening with Amanda was the first time I listened to it.




It melted and broke my heart.

I've never cried listening to music before. Until that moment. Reading the lyrics on the accompanying Youtube video at the same time as listening to one of the most emotionally charged records I've ever had the pleasure of hearing caused me to break down. It's been brewing for a good while now. Tears fell, I looked over at Amanda and tears were falling too. The type of stinging tears to cause you to wipe yours eyes for hours afterwards. Music has never had that effect on me before. Almost, but not quite. I guess there is always one song out there for everyone that will have effect on someone. THIS is that song for me.

I contacted Akira and Jo about this. This caused them to cry (I apologised to them, naturally). Jo said something very salient at this stage "Even if we haven't met in person there's no barriers, the physical world doesn't restrict us to sympathize. I feel deeply for both of you, and the reaction you had of the song is so strong and above everything I could have imagined. I have no words. Feeling so much love right now. "

The whole world (well, my world) needs to know about this. This is heartbreakingly beautiful. I hope you can spare 5 minutes out of your day to listen. If not today,  save it for later (you can do this here)
********************************
Lyrics of this song:
My love
Where you going my love
Don't wanna see you leave
You're taking me away with you
My love

My love
Are you going home
My love
Turning into light
Into dreams I see
too real
My love

My love
Can I hold you
Take your pain
Take everything you don't need
My love

My love
Where you going my love
Don't wanna see you leave
You're taking me away with you
My love
*****************************************
You can here more Flying Cape Experience over on their Soundcloud here: https://soundcloud.com/flying-cape-experience

I'd like to thank Jo and Akira for this moment.

How's Amanda today? Well, she's OK today. I'm noticing slightly more exaggerated involuntary shakes than previously, but she's doing good otherwise. Her social calendar is quickly filling up for December as she continues her 'Farewell Tour'

Tuesday, 17 November 2015

Lost For Words

Tuesday 17th November

I've now been sitting in front of my laptop for 40 minutes, wanting to write a blog but feeling stuck for words today. Today is a day where I seem to be dwelling on what's happening with Amanda, not that she isn't on my mind 24/7 because she is. She is constantly on my mind. Today I'm going through a whole load of mixed emotions (again), the main one being disbelief. If only I could wake up and the last few months have been a bad dream.

Amanda's pre funeral was quite simply amazing. It was an emotional afternoon but also very beautiful. It was a real celebration of her life. I may not have known Amanda for long, certainly nowhere near as long as her other friends but I'm a firm believer that the length of time you've known someone matters not.

A few months ago, actually it's now probably a whole year ago, Amanda and I joked on several occasions that we would like to be at our own wake and we always said that we would love to be able to hear all of the nice things that people said about us. At that time, neither of us had any idea that our secret joke would sadly become a reality so soon. Today I'm feeling that the whole situation is surreal.

The celebration of Amanda's life was so uplifting and to hear her long term friends and colleagues talk about her, it was quite clear that everybody feels the same way about her. She is such a lovely, kind, generous, thoughtful and caring person who has made a tremendous impact on the lives of everyone she has ever met, including myself. It felt quite surreal to be sitting listening to the several speeches about Amanda and then looking at her and thinking that this shouldn't be happening. It's extremely hard coming to terms with the fact that she may not be here in a few months but one thing's for sure, that while she is here, Amanda has a full diary, courtesy of her husband Dean. Between them, they are making sure that Amanda makes as many memories as she possibly can for herself and her friends.
My life has been enriched for having Amanda in it and I think I can say that on behalf of all her friends and family. Life is so very precious.




Debbie



Monday, 16 November 2015

Thank you for the memories


Monday 16th November

Wow! 
What an event! (Yes, it's even worthy of additional punctuation). I couldn't have dreamt of a more special occasion.

I was absolutely thrilled to celebrate such a special day with so many of my amazing friends and colleagues. I was deeply touched and moved by the groundswell of emotion and it was a real privilege to be able to be there while I still felt well. Even the much maligned hamster cheeks and Trappist monk hairdo could not have hampered my enjoyment. The circumstances were (just a touch) unusual but this special occasion created lots of memories to be treasured.
I just wanted to say a big thank you to everyone who showed their support. I give you my heartfelt thanks and if you're not name checked it's not that I have forgotten about you, you just being there was wonderful. We know people travelled from far and wide (from Sheffield to Shelton, from Chelmsford to Cobridge). I just loved every minute of it.

Particular highlights for me were:


  • Lady Kate Copeland's incredibly moving rendition of 'With A Little Help From My Friends'. A spine tingling belter which really resonated with me. She's not only a gifted advertising director but also a real musical talent.
  • The heart-felt speeches by Jo, Ally, Rachel, Kath, Fanny, Lucy, Andrew, Nada, Sam & Michele, David's mum, Dean and of course David.
  • Michala and her amazing mum who helped to create the fantastic 'This is Your Life' memory book and who made the delicious cakes.
  • Nick for creating the memory tree. I cried and laughed in equal measure when I went through it this morning.
  • Humbert, my kick boxing instructor bringing me a Stoke City shirt signed by all the players.
  • All the management and staff at The Church Bar & Restaurant who made us all feel so welcome and laid on a fantastic spread. Where else could you enjoy delicious food in such unusual yet delightful surroundings? 
  • The ever efficient Yes Agency team, thanks in particular to Karen and Kate for all their hard work behind the scenes.
  • Gill and Jo who acted as David's 'Yes' team on the day.


The biggest thank you of all goes to David Patrick for organising it all (with a little help from his and my friends) and for his generosity in organising the support for the charities that are so special to me.


I found the event overwhelming and incredibly special. I'll never forget it.

Amanda

Never a truer word said...


Words by chocolate. Not sure how long the chocolate will last...



Friday, 13 November 2015

Pre-event announcements

Friday 13th November

1) So after Amanda's health hiccup on Tuesday/Wednesday, she's back on form, back to usual, thanks for your concern. We've agreed that she stays on steroids daily. There's a long term issue with remaining on them, but in our world, there is no "long term" so this pretty much negates that argument.

2) So, the excitement is building for Sunday. It's amazing that in just over 2 days, an extra £800+ has gone towards some pretty special charities close to Amanda's heart. We've been doing our best to send everyone messages on Facebook thanking you all for your donations but if we have missed sending you a message, please accept this as our thanks smile emoticon We set a tentative target of £3,000 - if we beat that, don't stop donating - the more we can raise, the better we can make things for ALL these charities. If you can't make it along this coming Sunday, you can still donate here: https://www.justgiving.com/teams/amandamcdonald 
If you ARE attending, there is limited on street parking around The Church and neighbouring snooker hall on Town Road too.

3) There are some slots to see Amanda next week (Tuesday 17th afternoon , Wednesday 18th late afternoon, Thursday 19th late afternoon, Friday 20th mid afternoon if anyone would like to visit. Message me if you'd like to call in.

4) ** SPECIAL REQUEST NUMBER 1**
To Amanda's friends - we're respectfully requesting that NO Christmas cards are sent through to us please - have you ever noticed that Amanda doesn't send any back? smile emoticon Joking aside, instead of sending cards and the cost of a stamp, please consider a donation instead to one of the charities we've been banging on about for the past couple of weeks here: https://www.justgiving.com/teams/amandamcdonald (Price of card & stamp = £1+ so make that a nice donation to Douglas Macmillan Hospice, Meningitis Now or The Migraine Trust instead please).

5) **SPECIAL REQUEST NUMBER 2**
To Amanda's friends - obviously this is going to be a different Christmas to usual. Amanda would like her friends to give experiences that you can enjoy together rather than presents. (e.g. spa visits, afternoon teas, cinema visits, comedy clubs, theatre visits etc etc). She'd love to spend time with her friends rather than have presents. Contact Dean for diary availability. While we'll be governed by Amanda's condition on this, it's best to assume these should be booked sooner rather than later.
Thanks all - here's a completely different time and place a couple of years ago B.C. (Before Cancer).

Half a world away

Wednesday, 11 November 2015

Bittersweet Symphony

Wednesday 11 November 2015
Wow - crashed through the £2,000 barrier raised this evening - and thanks so much for everyone (friends, colleagues and complete strangers) who have donated to three charities very close to
Amanda's heart. Don't forget, you can donate to Douglas Macmillan Hospice, The Migraine Trust and Meningitis Now here: https://www.justgiving.com/teams/amandamcdonald

Even if you're not attending our special event this coming Sunday, you are very welcome to forward a brief story, a memory of a time you’ve spent with Amanda or any photographs through to David Patrick david.patrick@yesagency.co.uk.

Right, remember last night's post where i mentioned about Amanda's battles with migraines and that the only time she's been without migraines in her adult life was cruelly through chemotherapy and whilst on steroids most recently? (Remind yourself here: https://goo.gl/NHIUfx ), well, Amanda has been gradually reducing the steroids to reduce the swelling on her brain to the point that yesterday was her first day off steroids for a few weeks. Well, guess what? She had a migraine yesterday afternoon. And today too. It was so bad today that she was very sick earlier too - it's been her worst day for a few weeks. She's fine, just resting now, and focussing on being well enough for this coming Sunday, but it's a harsh reminder that nothing can ever be taken for granted right now.

"Life is not fair... why does it rain the hardest on those who deserve the sun the most."




Dean

Tuesday, 10 November 2015

Why The Migraine Trust?

Tuesday 10th November 2015

One of the charities that
Amanda is raising money for is The Migraine Trust.
Many of you who don't know Amanda would, quite understandably, ask the question "Why the Migraine Trust?' After all, it's not as sexy as the other charities, is it?

After Amanda's sister died 20+ years ago, Amanda started to get chronic migraines. They were awful. She'd have to pull the car over by the side of the road on the way to work to be sick such was the severity of them before she came across effective (expensive) medication to finally help relieve the symptoms many years later. Some very enlightening stats about migraines here: http://www.migrainetrust.org/key-statistics.

Get this as the ultimate irony. The only time Amanda has been relatively migraine-free during the last 20 years was when she was on chemotherapy for 4 months back in 2014 and now that she is on dexamethasone to control the swelling in her brain this past few months. Bittersweet, hey?

And guess what's happened today? We're in the process of reducing Amanda's steroid consumption to the point that today was her first day without dexamethasone for a few weeks. A little after 5 hours after the time she would have normally taken her steroid - she's only gone and got a (chronic) migraine.

Anyway, if you've got a few pounds or pence to spare, please head over to our donations page and we'd love for you to think about topping up The Migraine Trust fundraising pot please. AS you can see in the photo below, we've got some fundraising bits and pieces which will be on display this coming Sunday at the event.
Thanks so much.

Now I'm off to put Amanda's "Petr Cech" Migra-Cap on her head for her: http://www.migracap.co.uk/

Dean




Monday, 9 November 2015

Life lessons - pay attention in class

Monday 9th November

I don't want to get all preachy but why change the habit of a lifetime? Here are some life lessons I thought I would share before my brain turns to mush:


1. People are INCREDIBLE. Seriously incredible. They are generous, kind, outlandishly thoughtful and constantly surprise and delight. When you're having a bad day/road rage incident/*insert as appropriate, don't forget this.

2. There is nothing greater in this world (and the next) than love. Don't miss an opportunity to tell your friends and family how important they are to you, even if you are as rubbish at emotional expression as me.

3. If someone is seriously ill, don't feel that you have to pussy-foot round them. They are still the same person, albeit in a different outer shell (in my case grotesquely bald and bloated). They can still laugh at the same jokes and talk about 'normal' things.

4. Do not waste time. Time is ludicrously precious and none of us know how long we have left (although I am statistically highly unlikely to be hit by the mythical bus before the cancer sneaks in). Don't put off the good stuff for the mundane.

5. Laugh every day; take every opportunity you can. Laughter is the best medicine (although I would also recommend following the advice of medical professionals.)

6. Relish the little stuff. A good book. A chat with a friend. A cuddle. A shared joke. This is the glorious glue that binds us all together.

7. Ignore the little stuff. And this is hard. But trust me it really isn't worth worrying about.

8. Take a second to count your blessings. Life can be tough but it's also full of joy and laughter. Mine has been brilliant in lots of ways. Even now there's lots to be thankful for.

9. Be kind to yourself and others. You deserve it. There really is no need to give yourself a hard time.

10. Be yourself in all your glorious, flawed perfection. You are loved and cherished for who you are and what could be better than that?

Amanda 


Couldn't have put it better myself





Thursday, 5 November 2015

Moddershall Oaks

We visited our local country spa retreat, Moddershall Oaks, earlier this week.

For those of you who know Amanda, you'll know that there's nothing more that she enjoys than a nice leisurely pampering session and we've been very fortunate to visit this particular spa over the course of the past few years as it is so close to home.

We'd arranged a simple visit to make use of their rather amazing 25sq metre heated spa pool and fantastically snug lounge with toasty log fire, just the thing for a foggy November evening but we were blown away at the reception we had. We enjoyed smoothies, a rather delicious sharing platter and the staff were so attentive and friendly, especially Simon in the spa dining area, who was first class.

If you're undergoing treatment for cancer and wanted to visit, it's always best to check with the team treating you if there's any treatments at any spa location that you should avoid, but we can highly recommend a visit to Moddershall Oaks to wash away all tensions in the blink of an eye.

A special thanks go to Penny at Moddershall Oaks for arranging such a wonderful time.

Dean (Amanda's husband)

Fantastic sharing platter to kick start the visit


If it's too cold outside for you (hardly going to happen in the heated spa pool), chill out in the lounge area.

Nobody does it better - Amanda enjoying the heated spa pool. 

Taking advantage of the quieter midweek evening period. Spa pool to ourselves.

The rather splendid lounge area behind the pool area. Toasty and warm, oversized and very comfortable settees, plenty of magazines to while away a lazy day with.













Wednesday, 4 November 2015

Blogger's fear

Although it would not take a genius to discern that my prognosis is not good, I still thought it is worth doing a reminder that:

  1. survival rates increase significantly the earlier you identify breast cancer. It's imperative that you check your breasts regularly and act swiftly. My lump was stage 2c and even then, was successfully removed and treated.
  2. The survival rates for triple negative breast cancer are actually, despite my own situation, incredibly high as this article from Healthline.com explains. In fact, even at an advanced stage, 72% of women diagnosed with this aggressive form of cancer will still be around in five years' time. 
I cannot impress upon the people reading this blog enough to check their breasts regularly and not to get too panicked if you find a lump. Treatment is excellent these days and the vast majority of women will get through this. So as I've mentioned many times, even if you check your breasts with the dread of finding an unexploded missile, it is one of the most important things you will ever do.

So not to put too fine a point on it, CHECK, CHECK, CHECK AGAIN. Do it regularly and move fast if you spot anything unusual. Get an appointment with the GP. ASAP.


It's bananas but it's true

Wednesday 4th November

One of the treatments for secondary breast cancer on the brain is steroids. I've had a love hate relationship with steroids. Mostly hate.

One of the things I really detested was agonising shooting pains which kept me awake at night and also caused me to call out the emergency doctor on many an occasion. During one of my frequent visits to see the neurologist back in September 2015, she recommended eating a banana before bed every night as it sounded like I needed an intake of potassium. Et voila, problem solved, I've never had the pain again.

This is a great top tip if you're experiencing similar issues.

Amanda (typed by Dean)




Saturday, 31 October 2015

A surprisingly upbeat week

Saturday 31st October 2015

Apart from an embarrassing incident at the Harvester salad cart where I ended up slipping over on my hands and knees by the sauce bar, it's actually been a really good week.

I've been absolutely overwhelmed by people's kindness and generosity. I've been thrilled to see some old faces and receive some fantastic cards and presents, which have really made me smile.




Thank you all so much - to my clients, friends and family, who have made this week incredibly special and surprisingly up-lifting. I've been so touched and moved.

We're acquainted now with our Douglas Macmillan contact and she is already providing fantastic support to Dean and my dad. We are going for a tour of the hospice in the next few days which although it sounds grim, it will actually be a good way to acclimatise ourselves for what's ahead. Having gone to fundraising events there before, it seems like a beautiful place in gorgeous surroundings and when the time comes, I'm sure they'll do me proud.

I've had visitors from far and wide, such as East Coast USA (yes, seriously - someone flew in especially to see me - thanks Matt), Elgin and London so far. I feel incredibly blessed and although this is a hideous time, it's actually been wonderful and inspiring as well.

Since we've always been upfront on this blog, it has been a week of difficult decisions. We've met with solicitors, financial advisors and former colleagues. As anyone who knows me would expect, my affairs are now officially in order and this makes me feel incredibly reassured, as grim as this may sound. If there's one bit of advice I can share with you from this financial and legal experience, it is to get everything in order before you die so that you can enjoy time with the ones that mean the most to you.

If I've not replied to any of your messages, correspondence or gifts, it certainly doesn't mean they're not extremely precious to me. Dean is taking care of responding for me where time allows otherwise it would take me about 16 years to type a text.


Thank you all.

Amanda (typed by Dean).

Special upcoming event - A celebration of Amanda’s life, friendships and adventures!

On Sunday 15 November 2015 , at The Church Bar and Restaurant, Hanley, Stoke-on-Trent, Amanda’s family, friends and anyone known to her professionally are invited to a 'coming together' for an informal ‘This is your life’ get-together, which promises to be full of happy memories and laughter. Amanda’s long-term friend and colleague David Patrick is hosting the event, and he invites guests to bring stories, photos (please bring photos) and memories to share.

FULL EVENT DETAILS ARE HERE : 
https://www.justgiving.com/teams/amandamcdonald

Friends are invited to ‘drop in’ any time between 3pm-6pm, although you are very welcome to remain well into the evening beyond the end of the get-together. A hot buffet will be provided upstairs, but for those who prefer something a little stronger The Church also has a licensed bar downstairs. Renowned jazz singer (and friend of Amanda) Miss K Copeland will be performing a set with her band, ensuring the afternoon really does go with a swing.

All family and friends are welcome to attend, and – just for once – ‘positive vibes’ are welcome too!

Donations of £15 are invited, with all proceeds after costs going to Amanda’s chosen charities: 

1) The Migraine Trust (Amanda has suffered from chronic migraines for 20+ years and this is a very much under supported cause)
DONATE HERE: https://www.justgiving.com/celebratingamanda/


2) Meningitis Now (in memory of Amanda's beloved sibling, Steph, who died of meningitis, age 15)
DONATE HERE: https://www.justgiving.com/celebratingamanda3/


and 

3) Douglas Macmillan Hospice (which provides all of their hospice services free of charge to adults with life limiting illnesses in the North Staffordshire area and also provides much needed supportive care for their families and carers and who have provided Amanda's family with invaluable assistance in preparation for the months ahead).
DONATE HERE: https://www.justgiving.com/celebratingamanda1/


It would be great to spread the donations evenly, so if you're donating and see one of the charities doesn't have as much as the others, please donate to that charity accordingly :)

Once you donate, they'll send your money directly to the charity. They'll make sure Gift Aid (an additional 25%) is reclaimed on every eligible donation by a UK taxpayer, too. That means more money goes to the charity, faster.

For those unable to attend and have message us over the last few days offering any help in the aftermath of our devastating news, we would be extremely grateful if you would consider a small donation to any of the above charities. No matter how small, any donation you can make would be so much appreciated.

If you have any queries in the run up to the event, or would like to offer additional help with organising or contributing to running costs, please contact David at david.patrick@yesagency.co.uk.

Amanda 'Wonder Woman' McDonald

Tuesday, 27 October 2015

Comic proportions

Tuesday 27th October 2015

So the "Amanda McDonald Farewell Tour 2015/2016" continues (look out for the merchandise stand at the back of our flat on the way out), we've got flowers in every room in the flat now and memories of pot pourri from my childhood wafts through the bathroom as there are even two bunches in there now (well, it'll make it easier to water them I suppose).

Amanda is on good form. Her appetite is back (thanks to another cancer perk, endless supplies of chocolates) and the stream of old friends visiting, bringing along old memories with them such as photos of Amanda from years gone by is proving to be the source of much amusement for all.

Another cancer perk today was delivered courtesy of Amanda's good friend Nada, who had arranged for one of Amanda's favourite comedian's Gina Yashere  to record a short video for Amanda. If you're reading this Gina, this was just the tonic... (that is, if the tonic consists of nearly choking Amanda to death on her cancer medication) 

Warning, this video contains disturbing images of fluffy dressing gowns.




The Long Goodbye

Tuesday 27th October 2015.

(written by Dean on behalf of Amanda)

Things seem to be gathering apace. I've updated my will, I've set my financial affairs in order and begun to see people, possibly for the last time.


Whilst this may appear deeply morbid, to me it's a way of just spending time with treasured friends as I always have.

My colleague has also arranged a fantastic extravaganza to say my goodbyes (more details on that coming soon...) and while I am reticent to share my fat hamster cheeks (thanks Dexamethasone) and bald head with everyone, I appreciate that needs must.

I feel completely comfortable with people feeling sad around me but I think it's been a really nice mix of tears and happiness. I could not feel more loved and supported and certainly have not been found wanting in the flower department with daily deliveries aplenty. I feel very special and very loved and for that I am very grateful.


The postman gradually despaired at the thought of the daily delivery to Flat 3


Sunday, 25 October 2015

Pre-funeral funeral

Sunday 25th October 2015

Written by Dean on behalf of Amanda.

We visited my favourite church today, St Lawrence's at Biddulph. What was intended to be a loose invitation to those who were interested turned out to be a really special event.

It was so lovely to see so many family and friends there and Trevor, the vicar, did a wonderful job despite the complexities of managing a christening service at the same time and the difficulties he faced this week dealing with the funeral of 17 year old Jordan Burndred, who died recently when on holiday in Cyprus. I've said many times that I'm very very fortunate to be surrounded by friends. As much as it's unbearable to see the suffering of those around me, I am completely at peace.

St Lawrence's Church, Biddulph

I appreciate that it's harder for those that I love than it is for me. I want to make the most of all the time I have left & feel very lucky to have time to say my goodbyes properly.

There are a lot of challenges for my family and friends with coming to terms with this news. But as part of my faith, I believe there will be an answer.

Believe it or not, I actually really enjoyed today. There are not many people who get to experience a pre-funeral funeral. I often thought it would be better to have a funeral before you die so that you get to hear the nice things people say about you :)

It's very important to me that everyone supports each other when I'm gone. I know you all will. 


Friday, 23 October 2015

Tears on my pillows

Dean (Amanda's husband) here.

It's well after midnight as I type this out. A day of caring and putting Amanda to bed and with everything that's going on right now, it's a rare moment of solitude for me.

So here we are, two days after receiving the dreaded news.

What's been happening?

Sharing the news with family and friends (Amanda's MANY friends in particular)

Starting to spend even more time with the one I love.

We've got everything running to a timetable here. It's how Amanda wants it - of course it is. We have a diary system in place so Amanda can see her friends, some possibly for the last time. Her cancer chum who helped to set up this blog with Amanda visited Thursday and was devastated. Although we've only known her since early 2014 during which time she was undertaking her own battle with breast cancer, they've become best breast friends.. She says the following to me "I don't understand it Dean. She can't die. She just can't" I can't answer that. For someone with little faith, my rational side says it's just Amanda's turn. But when you consider she's never drunk, smoked, always looked after herself and eats healthily, some invisible force hasn't half shoved her in the back leaving her exposed. And that, my friends, is simply not fair.

During Friday 23rd October, we awash with a flurry of deliveries. So many flowers now that we're charging £5 an admission into our newly created botanical gardens. I'm dealing with so many requests to see Amanda, messages from complete strangers who have been compelled by the unbelievable storylines in our very own soap opera in the last two years ("It's unbelievable, no one would ever write THAT....")

And chocolates. so many chocolates. On one hand, it'll keep me happy for the next three years...although I would rather share them with someone very special alongside me. On the other hand, with Amanda's increasingly fragile appetite, it's a cruel, cruel torture.

Our contact from the very renowned local hospice Dougie Mac arrived today and immediately went about her work in a compassionate but also very efficient way (Amanda approves of efficiency). There's such as stigma associated with a cancer hospice, they provide so much more, such as supportive care for families and carers, something we'll learn to lean on so much in future months. Within  hours of arrival at our flat, Davina (our contact) had already arranged for a wheelchair to be made available so I can take Amanda out for assisted walks while she deals with her weakness (please don't be alarmed at this 'weakness' - she hasn't eaten for days and as a concession today, she's resumed taking the Dexamethasone steroid which should ease some issues affecting her head and kickstart her appetite). She also arranged for our prescription remotely so we didn't have to wait for hours for a GP. She covered the services provided, including various facilities available to assist Amanda, such as various therapies, treatments and the like. It sounds like a home from home. We did have to laugh at the constant interruptions of flowers and chocolate deliveries arriving during her 150 minute stay. She also tells us we're able to claim for a Personal independence Payment of £80+ per week to assist with things.

It's not been easy since Wednesday. There have been many tears, including a three way hug waterfall between Amanda's dad, Amanda and myself. I've found my outpouring of tears a relief to be honest. I've held back far too much over the years but this is something else. (Sorry to the Doctor at Trent Vale Medical Practice who I broke down in front of today, sorry to Cheryl who I broke down in front of today, sorry to Davina from Dougie Mac....you get the drift.) I managed to get to my mum and dad's briefly tonight. Mum has lost two stones in the last 6 weeks and not well (tests next week) and my dad is still recovering from her hip operation. I don't know what we were talking about tonight when i was there. It was something innocuous and all of a sudden, the waterworks fell. 



This is what happened after I wrung my handkerchief out to dry tonight...
Haven't seen my dad cry for such a long time, and it's heartbreaking for me to see him like this, especially with his Parkinson's and hip condition making him feel so helpless. I will take Amanda round to see them when she's fit to do so.

And then there's my darling wife. We've cuddled, we've laughed, we've cried, we've cried some more, we've laughed at messaged from people we've never met thinking "Who are they", we've had flowers from people whose names have been misprinted on the attached labels so had fun guessing who they should have been with. We've held hands in bed, we've cried for absolutely no reason whatsoever when talking about the most silly things. The things that really set me off though are when she lays her head on my shoulder. I'm lying there within inches of the evil cancer lurking within her skull, completely disabled and helpless as I can't do anything about it. We have shiny pillow material and the tears fall and echo out loud as they hit the surface. She's been saying she's dying for quite some time now. I was of the opinion that until we're told medically there's no further chance, then that's the path I will take. that path was blocked off on Wednesday.

Amanda is struggling with texting and her ability to type. I've already had her dictating her blog to me and texting on her behalf from her phone. I've got her passwords to various accounts as she has difficulty remembering these now. I'm hoping that the resumption of dexamethasone  may improve things, although we were told that things would decline. I don't want this yet, not to my angel.

Amanda has also arranged for her financial advisor to call around, Like it or not, we have to start the process of approaching the companies who own our policies to start the process of calling our monies in. Also we're having a solicitor around next week to sort out an updated will. I'd much rather invite round a Vietnamese Pot Bellied Pig for some naked wrestling to be honest. It's all grown up stuff and despite being grown up, we shouldn't be doing this for at least 20 years.

Can I do this? Do I have the strength to do this? I don't know, but I'll do whatever i can to make Amanda's time with me as comfortable with others.

I am aware of the outpouring (and 'pouring' being the appropriate word for many of you shedding tears) on my own Facebook page. While i'm unable to respond to all your comments, observations and fantastic photographic memories that you have been sharing - after all - my time with my wife is very important right now - we are enjoying them.

I'll continue to try and give an insight to what we're going through where time allows going forwards. It won't be pretty, but it's not really supposed to be, is it?