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.


Monday, 16 November 2015

Thank you for the memories

Monday 16th November

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.


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.

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).

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."


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/


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?


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)