2020 – A (Belated) New Year!

I started writing this post a couple of weeks ago at my last consultant appointment and forgot to post it so here it is with a postscript at the end!

Although my last post was written on Christmas Eve, looking back on it I must have been Hugh as a kite!! I hadn’t realised quite how bad it was until Nick told me on Christmas Day – by the end it didn’t make any sense at all! But the good news is that the sleeping tablets got me asleep and I had a much better Christmas because of it!

In fact we had a lovely Christmas and New Year. It was massively busy with guests but a great time of catching up with people and making the most of my health as it is at the moment.

And now we’re on the countdown. Or at least I am. Unless anything changes, I have 10 weeks left on treatment, before I have a 2 month break and then my second Stem Cell Transplant. I really do think myself lucky to have had 9 years inbetween my transplants but it doesn’t stop the interpretation that I’m feeling about going through it all again. We’ve got a date now for February to discuss the procedure (and how it might have changed from my first time) so that will be interesting … it has definitely made it feel more real!

But as for the here and now, things plod along really. As I said, I’m back on the velcade and it has hit me hard this week. It always seems to when I have a break! I slept for 3 hours last night (while the kids made their own dinner and sorted themselves out), and then got up this morning, pottered for half an hour and then was back in bed until it was time to leave for hospital at lunchtime! And I’m still exhausted and feeling. Very bizarre.

None of it is made easier by the fact I’ve now also been diagnosed with Meibomian Gland Dysfunction (MGD). It basically means that the glands in my eyelids are blocked and so can’t secrete tears properly. So I either have really dry, itchy eyes, or I have tears rolling down my eyes! Normally the latter! It makes you just feel even more tired and blurry eyed than normal which I can’t imagine helps my overall feeling of wellbeing.

Haha. Also just had a letter today from Sajid Jarvis saying well done for winning the Helpline Volunteer of the Year Award! He’s our local MP but I was quite impressed that he wrote. I might even see if we can get him to donate something for Sam’s #15B415 challenge! Someone might want the normal bottle of wine that gets sent through, signed!

Postscript:

So not much to add since what I wrote above. Everything is still on track, and the sleeping tablets are continuing to help me to cope with the lack of sleep…although this week has been exhausting (but due to sorting my dads house all weekend and lots of wallpaper stripping!). I’m still waiting to hear whether my stem cells from first time round are viable but will hopefully find out next week….it’ll be a massive relief if they are!

In the meantime, I’m feeling pretty positive about the #50KB450 fundraising at the moment. We’re nearly at 10% already, much helped by asking people to donate instead of sending me bday cards this weekend! I’m also sending out lots of letters to businesses that I know to see if they can help as that’ll be my easiest way of raising money! Sam is doing really well with his #15B415 challenges (he’s raised over £1000 himself!), and all the other family and friends who have got involved have done amazingly well already, with more coming in all the time. I feel ever so humbled by how much people have been prepared to do!

Merry Christmas 2019!

It’s that time of the year again, and given that we’ve made the decision to donate to Myeloma UK rather than send all our local/ online friends cards, it’s time for the Christmas newsletter to come out on my blog. This is my one post of the year where I don’t actually write it – instead, Nick has the privilege of sharing our past year with friends and family! So, over to Nick…….

To our family and all our friends (I say our friends, but of course mean Debs friends – I don’t bring much to that particular party)

Unbelievably this is CNL9 from the Famille de Gascoyne. I genuinely believed in 2010 when Deb first suggested a newsletter that it was one of her passing fancies – like going to church with the kids, buying an ice-cream maker or having regular quality time with yours truly (cheeky wink emoji), but I was wrong and you don’t hear me say that often, let alone commit it to text.

So here I am, nearly a decade later, trying yet again to make the trials, tribulations and joys of an average Midlands family vaguely interesting and usually failing – but because one or two of you told Deb you found my witterings slightly humorous, I now have to do this for the rest of my life.

Thanks and Happy Christmas.

Ok, now I have set the tone please settle down with a warm cup of bleach and enjoy the next few minutes!

2019 has been a year of house renovations, family growth, evil return of Myeloma, GCSEs starting, new jobs and dog whispering – and not necessarily in that order.

Let’s address the crap bit first. As many of you know, Deb has started treatment again for myeloma following relapse and she makes the pilgrimage each Monday to QE Birmingham where they infuse her with newly approved treatments to kill as much of the cancer as possible in preparation for another stem cell transplant some time next year (something to look forward to!!).

However, true to form, Deb is not defined by her illness but rather uses it in the most positive of ways to support the charities that in turn support us and many other Myeloma patients. We are so proud that she was officially recognised this year when she was nominated for, and won, ‘Helpline Volunteer of the Year’ at the Helpline Parnership awards, which recognised both her fundraising for Myeloma UK’s Peer support network (£125k and counting – spoiler alert as you are about to see another way we can take your cash) and her active participation as a Peer Support Volunteer.

In the 132 years I have been writing these newsletters, this is the first time I can quote someone (accurately) – in this case the Chief Exec of Helplines Partnership……

 “Deb is a superb fundraiser for Myeloma UK, enabling key services to continue, an ambassador, a committed volunteer for over a decade and great at her job because she has true empathy with her peers.”

She went on to say……“and of course this can only be achieved by the support of a wonderful, attractive and super-intelligent partner.” But that bit didn’t make the paper!

As stated earlier, Deb continues to actively fundraise and is currently focused on her 50KB450 and getting as many people involved as possible (www.justgiving.com/50kb450) and Sam has got into the act with his 15b415 (www.justgiving.com/15b415). Please take a look, keep up your support and maybe Deb can push for a CBE or become a Dame……

Whilst doing this, until recently when she has had to stop, Deb has helped to look after her father (who has sadly had to move to a home after a bad fall), netballed, social media’ed, dog trained, project managed, argued with builders and generally managed the entire household and all the work that goes into running a young(ish) family. I am, as always, inspired and proud in equal measure.

For balance and accuracy I should also mention that when she is on high dose steroid she is an evil witch – but only when she is awake. They didn’t mention that in the newspaper either – fake news strikes again!

All that work on the house has meant we have had more ‘staycations’ than holidays away, but in October we did travel to the far-away land of deep fried pizza and Irn Bru on a cultural exchange to sunny Scotland. Whisky, socially educating the children with the Rocky Horror Picture Show, visiting Myeloma UK, camera obscurer and hot tubs is a good summary of our adventure. We had a great time and are starting to think about next years oddessy once treatment is over.

Moving on to the fruit of my loins…..

Rebecca is 15 and in her first year of GCSEs (wow – where did that time go?). She has gone from strength to strength this year and is super busy with a plethora (always wanted to get that word into a newsletter – it means loads but sounds far more pretentious) of activities and interests.

She has progressed from guides to Rangers after a great 3 years & completing the Baden Powel award, volunteers weekly at her local Brownies, has fundraised for a trip to Romania in 2020 where she’ll work as part of a community program (or complain regularly about the food, or both), is doing the Duke of Edinburgh challenge, learning taekwondo, studying photography & cornering the Hagley babysitting market!

In early Autumn, she and I completed the Yorkshire 3 peaks as we cavorted for 12 hours over 3 gigantic mountains in Gods own country of Yorkshire. I say we cavorted. To be clear, Rebecca cavorted. I walked, stumbled, limped and then cried – but with Mrs G support we completed the task and thanks to everyone who supported and sponsored the event. Rebecca has had a great year and we are super proud of the person she is!

Sam in now 13 and well into his third year at secondary school. I have just re-read last years exciting instalment of the Gascoyne Christmas Newsletter, and to be honest I could just cut & paste my summary of the boy-child. School, football, mates and Xbox (not necessarily in that order). I mean this in a positive way because one year it might read very differently – but for now I can say we are proud parents of a bright, funny, kind boy. Football is still a big part of his life and at the end of last season he was awarded ‘Most Improved Player’ for his local team – as proud parents we applauded and after the presentation asked how he felt and he said ‘ I must be most improved cos I was shocking at the start of the season, Dad can I have some money for getting the trophy?’ A theme is starting to appear me thinks.

I asked Sam if he wanted me to say anything else about him and after a milli-second consideration he said ‘No. Can I have some money for a drink?’ – particularly strange as we’re at home!

For me 2019 has been a year of house renovation, family and starting a new job. I am now working with a team who have brought a new blood cancer treatment to the market in the form of CAR T – google it and be amazed as it is truly fascinating and of course I have a personal interest as they research potential use in myeloma. Watch this space. [Edit Deb: He has been a superb strength too to us all as a family – he does it quietly and without fuss so I need to add this as it is a huge job that he takes on without complaint after his long days in London. We couldn’t have managed the last few months on treatment without his love and support and whilst he would say it’s just his job/ life, not everyone would do it so well].

So that’s it. 2020 will bring its own challenges, highs and lows and I want to thank all of you in advance for your support and love – we do, and certainly will, benefit from it all.

Wishing you all a Happy & Healthy Christmas and 2019

With all our love

Nick, Deb, Rebecca, Sam & Marley xx

Merry Christmas

So Nick and I have done our usual donation to Myeloma UK instead of sending Christmas cards to our friends – as much as I hate how few cards it means we receive these days, the fact that charities are receiving money has to be a good thing.

But we have still done our annual Christmas newsletter for anyone who would like to read it (and who gets Nick’s sense of humour….or lack of!)

So wishing you all a very Merry Christmas and a 2018 that is happy and healthy where possible.

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2017 Christmas Letter

 

 

Last Christmas

The following was written some time ago, but unfortunately, I live in a world full of germs and I caught Influenza A and subsequently forgot that I had written this blog, let alone that I needed to post it. It seems a shame to waste my ramblings; so close your eyes (then open them again so you can read) and take yourself all the way back to December 2016:

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You may think that Christmas was so last year, but as today is the 10th Day of Christmas, I think I can just about sneak a blog post about Christmas under the radar.  Plus, ordinarily I love Christmas, so it would be remiss of me after a year of blogging very little, to not recognise Christmas as it is a pivotal part of my annual calendar.

This year, things were different. I found it incredibly diffficult to get into the Christmas spirit. The Christmas spirit usually comes so easy to me. The drugs seemed to have sucked all the energy out of me, preventing me from participating in some of my favourite Christmas activities. Thus, going through December, I was not seeing combinations of red and gold and getting goosebumps, I wasn’t singing O Come All Ye Faithful in the shower. I felt nothing. I know what the main cause for my humbug was, and it opens one up to saying a crude but well timed joke about George Michael; was this, 2016, going to be my last Christmas? I’m not plucking this negativity from the air by the way, there’s a genuine (outside) chance that it was. With that seed planted, what Hope was there to have an innocent, Myeloma free Christmas? 

So, when it came to making my beloved Christmas cards, cards that I had designed and invested time and money into, and had been thinking about since September: I just couldn’t do it. For at least three days, I slept next to all of my craft paraphernalia convinced it would help me complete them. It’s a similar strategy I employed at university walking round with the biography of Menachem Begin for six weeks, hoping that it would go in via osmosis. It didn’t work then either. Comparing the feeling I had to university stress is apt. The enjoyment I was gained from this activity, had passed. All I felt was undue stress. 

I argued with myself for three weeks. You enjoy it, Emma! Pull your finger out, Emma ! Everybody is expecting them! You are a failure! That was one side, the other side just rolled over and fell asleep. It seems like such a mundane thing to get so upset over, but upset I was. Every year since I was diagnosed, I have made my own Christmas cards. Last year, I made and sent over 50. Was the fact I could not do them a sign that medically, I am detiorating or had the Grinch simply stolen my Christmas?   

I cannot answer those questions, but on top of not making and sending Christmas cards, I also failed to do any Christmas themed baking or make the additional decorations for my tree I had been planning for months. The weight of each of incomplete activity, was unfathomable. Is it really possible for me to have an enjoyable Christmas without all the planned activities I once deemed to be fun? 

I refused to give in. I sought any excuse for my humbug that did not involve Myeloma and the makings of a bad TV movie. It must have been somewhere. The search felt endless. Could my lack of festive feeling be due to my age?  That’s never been an issue before, so Veto. 

Due to financial restraints brought on by  not working and being on benefits , I was unable to buy many Christmas presents. Thinking about what gifts I can buy my loved ones and wrapping them up in a style to suit the recipients personality, has always been a Christmas highlight. But alas, that was no longer open to me. I found that I did not even have the energy to think about presents. 

What about work? I thought. My experience of working in an office is that during the month of December (and the back end of November) there would be at least one discussion a day about Christmas. Work drinks, family drinks, Christmas presents, wrapping; the talk was endless. Despite forcing myself to watch endless Christmas movies, perhaps my failure to socialise with colleagues, buoying each other’s festive spirits up day in day and day out was the cause of my sadness. 2016 also marked the first Christmas I had not been invited to a work Christmas Do since I was 14. 

Could that really be it? Had being forgotten by my work colleagues ruined Christmas? In short, no. Veto. I was invited to the Christmas party last year and chose not to go because I could not afford it, and I did not feel any the worse off. Like last year, my free time has to be used and planned carefully. I do not have seven days and seven nights to play with anymore.

It would also be wrong not to mention the level of pain I was in during December. I was in a lot of increasing pain, which on many a day, prevented me from moving. I don’t know how responsible it is, but my chronic pain was definitely guilty of ruining some of December. Upon return to my mother’s I discovered that I could no longer climb stairs without using both banisters. Yet another sign of deterioration perhaps?

Somewhere around the middle of December, coincidently, the day Rogue One was released, something strange happened. I uttered the words out loud that I was not going to be able to complete the cards, Mamma Jones told me it did not matter, and I began to relax. I really relaxed. My dear sweet Mamma lifted the weight off my shoulders at a most crucial time.  Socialising time. 

The 16 December launched four days of back to back socialising, which believe me, is now something very hard for me to do. I was suddenly busy and somewhere in that busy-ness, and laughs with my friends, I stopped dwelling. I stopped yearning for what once was and I began to enjoy myself. I smelt satsumas, mince pies and sang along to the Muppets. Finding my way out my slump gave me goosebumps.

And then, there was home. Home. Aware, at least I think they were aware, that I had been on a long Myeloma Downer, my family pulled out all the stops (at least I think that it was intentional). Christmas itself was marvellous. For the nine days I was home, Big Sister and her offspring were around for eight of them. I felt loved. The time went so quickly, that when it came to New Year’s Eve, I did not want to leave my family. For leaving meant that Christmas would be over and we might not know another one like it. 

Before I move on, anybody advising positivity, believe me when I say that I do not want my fears to become a self fulfilling prophecy. My fears are real and I cope with them by voicing them, much to the chagrin of my loved ones. I see things more clearly this way.

I did not intend to enjoy Christmas. I had been so worried that it was going to be my Last Christmas, that I was convinced I would find every tradition, every action, melancholy. Melancholy doesn’t cover it, I thought that every tradition, every action would rip my heart out through my throat and lay it bare for all the world to see. Thankfully, that did not happen. 

This photo clearly shows me unwillingly embarking on my journey back to London Town.

For me, our Jones Family Christmas worked so well because everybody, well all eight of us, was home. At no point was I stuck in the middle of nowhere with nothing to do. Between Mamma Jones, Big Sister and my neices, I had plenty to do. We did things together as a family and had family fun; I wanted to bottle the feeling up and savour it. 

I do wonder, with the benefit of a few days of hindsight, if it is possible to have a Christmas without the feeling that it will be my Last. Should I have just saved this blog for next Christmas? It’s the unknown. Everything from here is unknown.  I do know that things are changing, I can feel it in my aching bones. I was aware as of the 22 December that my treatment is going to change at some point in the near future, meaning my current treatment is failing. We are running out of options. Another daily thought that added weight to this theory of doom. 

I spent my New Year’s Eve with some friends, doing things that adults do like watching Jools Holland, eating nibbles off paper plates and playing board games. Somehow, I managed to stay out until 4am. I don’t think I did that for all of 2016. To fast forward, I did not have a hangover on New Year’s Day. A success by no stretch of the imagination. 

For the evening in question, I had managed to surround myself with good people and there were a few times during the evening that I could feel that hand approaching my heart again, ready to detach it from my body. I really am full of emotions these days. I don’t want to repeat earlier paragraphs, but essentially high from my visit home, now surrounded by friends I love, I wished that this was not my last New Year’s Eve. 

Despite being asked the question, I did not make any resolutions for 2017. I do not see the point, not for me anyway. Every time I was asked about resolutions or plans for 2017, my answer was the same. I do not want to make noticeable  changes. I want to keep on living. I want to be able to do what I am doing, maintain my freedom.  I want to enjoy my friends and my family. Most of all, I want to be able to make the most of my good days and get through the bad. 

Perhaps these are resolutions after all. 

And this is where the writing stopped and the flu took over. It took over for a whole fortnight, marking a great start to 2017. I know what caused the flu (New Year’s Eve) and who the culprit was (Nameless). I still would not trade NYE’s, despite the vomit and general foulness of the flu. I was ‘living’, right?

EJB x

I love Christmas

I love my memories of Christmases past.  The ones when our boys were little are the ones I cherish most.  This Christmas, after a snow cancelled flight and driving a rental car through the night with friends we just made at the airport, Diane and I arrived for a week’s stay at our oldest son’s house in Michigan’s UP.  It was our first reunion with our grown up sons, their wives and kids (is it a re-union if it’s the first time?).

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One Christmas morning years ago, Diane gave me a 1957 Chevy (click here to read about that).  That’s a memory that’s hard to beat, but this year was our best Christmas yet.  Holding and interacting with our little grandchildren was priceless.  Witnessing how our sons love their wives and kids was rewarding.  Diane got to ski again after many years, and I got to take pictures with my new camera (shot hundreds, shoulda taken more).  We played in the house and we played in the snow.

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Robin took this shot through his phone, from the camera on the drone, before a take-off

My younger son, Robin, gave me a flying camera, a drone. My first flying lesson began by launching it from the ice covered snow in the garden.  I hope it’s a good memory for my three year old grandson, Kellen, when he hugged the gate for protection like I told him, as the nearly controlled drone buzzed over his head to awkwardly touchdown behind him in the back yard.

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Brandon made this ’57 Chevy on his computer

 

This Christmas could have only been better if, on top of being with our kids and grand kids, I received another classic Chevy.  Well, actually, my oldest son, Brandon, did give me a 57 Chevy he made with his computer and router.

I hope this gathering was a preview of Christmases future.

A few weeks after returning home, I was in Portland to help my brother, Mark, prepare to move.  Later, we drove over to see our brother Dan at his Alpha Stone Works shop.  While Dan was showing me the new stone cutter (he went to Germany to buy) he asked how I was, and if my cancer was gone now.  I explained that Multiple Myeloma doesn’t go away, but I’m doing okay right now, and that I get tested every three months to monitor the cancer.  I told him, “I expect to do that for the rest of my life…..  Get it?  For the rest of my life?” Because next time the cancer activates, or the time after that – one of those times will be the last time, and the following result will be my life ending.  Usually quite stoic, he let out a hearty chuckle.  He appreciated that dark humor enough to recount it later at the restaurant with the five of us at the table.  We all enjoyed a good laugh (though some politely tried to resist), not over the inevitable end of my life, but from stumbling upon a little sarcastic humor in the situation.

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On our last visit to the shore of Lake Superior, we were burning our bare feet on hot sand just a short walk from here.

I remain thankful to God for a life full of blessings.

 

Happy Christmas for 2016

Nick, I, Rebecca and Sam would like to wish all our family and friends a very Happy Christmas and that we will be thinking of everyone as we go into 2017. I know that it isn’t an easy time for so many people, but we hope that it allows people space to be with people that care about them and to take time out for themselves and find some comfort.

As some of you will already know, we have decided that this year, we will cut down Christmas cards to the bare basics and instead, that we would make a donation to Myeloma UK. It’s been a hard decision as I love getting Christmas cards and I’m conscious that people tend to have a reciprocal relationship with them. But given how important my fundraising is to us, and the work of Myeloma UK, it seemed to fly in the face of common sense.

However, for those few people (and yes, there really are a few!), we have still done the annual gascoyne-christmas-newsletter-2016 (well….when I say we, I mean Nick!). So, please find it attached….read, digest, and feel free to stop following my blog if the sense of humour offends…..although I would ask you all to remember that I have to live with him!

Here’s to 2017…..may it be a good year!

West Ride * Adams Hill * Clent * West Midlands * DY9 9PS

To all our family and friends

I am delighted[1] to pen the fifth Gascoyne Christmas newsletter and share the trials and tribulations of 2016 (whether you want me to or not)

The family have settled down well in the West Midlands and we have now had a full year in our house in the Clent Hills. It is a beautiful part of the world and we have spent many happy hours (Deb and I are happy, the kids less so) walking the different trails in all kinds of weather. It is fair to say the kids like it more when we are ‘Jessie sitting’ – having a dog makes walking much more enjoyable – so thanks to Ruth and Mike for the dog-loan – I know you miss her (until the third bottle of prosecco kicks in!)

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The Lakes 2016

Family was a significant reason for our relocation and it has been great to spend more time with Chris, Jen, Hugo and Darcey, Mum and Dad and Ruth and Mike and their (not so little) kids.

For the immediate family it has been a busy and demanding 2016. Rebecca turned 12 in October and started at Haybridge Secondary School in Hagley (You can’t be old enough to have a child at secondary school I hear you all yell). She has settled in fantastically well, developed friendships, become increasingly independent and we have received superb feedback from her teachers at her first ‘consultation evening’ [parents evening in old money].

She continues to be a committed Girl Guide and recently prepared, single handed, a three course banquet of Tomato soup, Mac cheese and wicked chocolate squares with ganache……. and no one stopped breathing. A success indeed.

She is turning into a sweet natured, slightly ditsy, young lady and we are delighted to support her as she grows (let’s see if I am still saying that in 12 months when she’s a teenager).

img_4354Sam was 10 in August and is now in his final year at primary school. Although the move from High Wycombe was tough for him, he has settled in here in the Costa del Clent and has a passion for all sports, mathematics, and royally winding his sister up – an activity at which he excels. Sam’s big decision this year, other than which hair product to use, was choosing secondary schools. He made the choice some months ago to both sit the 11+ and the entrance exam for Oldswinford Hospital school (renowned old boys include yours truly, his uncle Chris, Barbara Taylor Bradford[2], Cousin James and Cousin Michael). He did extremely well and was so happy to open his results as he secured marks high enough to have his choice of schools. We will see in March how that pans out – a topic for the 2017 newsletter.

Deb has started a new job. This is a true statement and not the start of some poorly judged joke (like this comment!). A local charity is now benefiting from her fund raising experience and although this is, as I write, quite a new venture she is already making a difference and the coming months should see her hard work come to fruition.

The job is of course in addition to her unceasing work for Myeloma UK and in 2016, as well as raising additional money herself, she has inspired others to fundraise for this charity. A significant event last month was the ‘Bling on the Night’ Ball near London, organised by Debs’ sister Liz (or Lizzy as I like to call her), which will donate nearly £20000 to Myeloma UK and LAM Action. We would like to thank Liz and Julie for their hard work creating and holding the event and those who were major sponsors, including Truckman – thanks Mike.

I am delighted, and a little bit proud, to say that in 2016 Deb has taken her total fundraising for Myeloma UK past the £100,000 mark. I would love to say that upon reaching this zenith Deb has stated her goal is achieved and her appetite sated. I would love to say this, but of course I can’t, because I suspect this is some kind of positive personality disorder and she is accelerating towards her next event at the Stone Manor on 22nd April next year. If you like cheese, or wine, or better still both get the date in your diary now coz it’s gonna get cheesy and winey on 22nd. And she’s forcing me to say that if you have anything suitable for an auction, she would love to hear from you (even if she normally ignores your calls!).

Add to this 2 kids (she would say 3), 2 houses (more on that later), a destructive father (see appendix 1: insurance claim for re-plastering, appendix 2: insurance claim for garage door and appendix 3: claim from West Midlands police force for escort to our house), netball, move to new area, running a household, attending multiple hen-dos and weddings and life – it has been a busy year!

So to the main event – me.

In summary……. Pickups til June, Whisky til September and Hepatitis C ever since…what a party!

Within that hedonistic year, 2 highlights are genuinely whisky and badgers!

Whisky first – during a glorious 3 month gap between jobs (still can’t believe Deb allowed this) Dad and I took a week in Islay off the west coast of Scotland on a malt whisky pilgrimage. We visited 8 distilleries, sampled multiple drams, learned a new game with 3 Swiss men in a bar (insert gag here), watched goats, walked, got stuck in a bog, cut peat and sampled some more drams. We laughed a lot – a trip I will never forget.

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Next, Badgers. In a moment of optimism earlier in the year we purchased a house with the aim of securing planning permission for a second house in the garden of the first. Without wishing to mention my father too many times in this Christmas letter, he has supported us massively as we have attempted to navigate local authority policy and we hope we are close to a decision. One of the many things we have learned is that ‘nimby’ism is alive and well in Hagley, and that, according to local residents, every bat and badger in the county, holidays in the garden of our newly acquired house. I have purchased a mammal sanctuary of such proportion I half expect to find David Attenborough up to his armpits in guano whenever I visit the site. To disprove the theory we hired an ecologist[3] who found no supporting evidence but did recommend that when work began on site any trenches must have sloping ends to allow repentant suicidal badgers a means of escape. I blame Brexit.

So the end of 2016 will see the Gascoyne’s travelling down under for the trip of a lifetime. Niece Jo, will marry Ben, in Adelaide and we are delighted to be able to join them and celebrate their nuptials – you can look forward to my report in CNL2017.

So with that we would like to wish you a Very Merry Christmas and we hope that 2017 brings you much to look forward to (not only next years Christmas letter)

With all our love

Nick, Deb, Rebecca & Sam

[1] derived from the Greek deligius meaning nagged repeatedly by ones wife

[2] factually incorrect. Taylor Bradford is female and attended  Northcote School for Girls

[3] derived from the Guatemalan ecolop meaning charge at £250 an hour and always recommend a bat box

 

We’re Ready for Christmas!

We live way back in the woods…3/4 miles away from the nearest neighbor.  Thus, we don’t decorate the outside of the house….. just the inside.

This year, we thought we’d get Chinese take-out on Christmas Eve.  Christmas day will be just the two of us.  I’m making Roasted Duck, Jeff Smith’s Red Cabbage, his Balsamic Brussels Sprouts and Gratin Dauphinois (A decadent potato dish)

Remember the reason for the season….Keep CHRIST in Christmas, gang!

Ain’t nothing but more bad news.

The post I had intended to write around the 7 months post transplant mark was going to be a slightly celebratory post about being able to enjoy “dirty” food having adhered to a clean diet for the first 6 months after my transplant. Following a clean diet means nothing unpasteurised, nothing live, no raw protein sources, superfastidious washing and peeling of fruit and vegetables, no open deli or bakery stuff and lots of other things. I didn’t majorly miss anything as my appetite was quite poor anyway. After 6 months I bought some of my favourite blue cheese, some unpeeled red grapes and was hoping to enjoy with a glass of red wine. The cheese was delicious but the grapes and the wine not so because of the GVHD in my mouth resulting in very altered taste. The taste is proportionately worse as the nutritional benefit of the food increases and I mostly enjoy extremely salty and/or sugary foods!

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Around the 6 month mark and except for the gruelling Cidofovir treatment I mentioned in my last post I felt I was getting stronger and less tired. I barely had time to enjoy my progress and recovery. So much has happened since that post 3 months ago I can do no more than briefly outline it otherwise I will continually be playing catch up which really isn’t what I wanted this blog to be about.

26 October

I got the devastating news that my light chains were rising from the test on 13 October, not just creeping up a little as they had been but going up sharply from 127mg to 634mg.  The plan to be off Cyclosporin (the immune suppression/anti rejection drug) and hopefully stimulate some more GVHD and graft v disease effect hadn’t worked  and wouldn’t work now that the myeloma burden was too high for my new immune system to have any control over it.

2 November

I started myeloma treatment which consists of Revlimid, an oral chemotherapy  which I take daily 3 weeks on and one week off and my old adversary dexamethasone, 40 mg once a week. I have had Revlimid before as part of VDR Pace but only for one cycle and I didn’t have any response to the regime. The hope is that now I have a fledgling new immune system, the myeloma may be resensitised to  Revlimid and/or it might provoke some GVHD.

5-7 November

A good weekend in London visiting a dear old friend taking in the excellent Weiwei exhibition, and the lovely Eltham Palace. I was tired but we managed to achieve a good mix of relaxing and doing.

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23-28 November

A shortish break to Gran Canaria with my lovely oldest friend (old as in length of friendship, not age). A bit of a mixed bag as I was not really well enough to enjoy it but felt pressure to do so because I had gone and thought it was an opportunity to get away whilst I was able to.  It was good to get some sun on my skin (through the factor 50 sunblock of course) and swim in the sea but I couldn’t enjoy the cuisine or the drink because of my altered taste apart from the divinely salty pimentos padron.

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30 November

I found out that at my last light chain test 0n 16 November, two weeks into the treatment my light chains had risen to 990mg. The plan remains the same which is to have 4 cycles of treatment, each cycle being 28 days. I was told to ignore this test, logically I know this is right for various reasons but emotionally I couldn’t. Given the depression I have been feeling combined with the treatment being so hard on me, it would have been some consolation to know that I was responding.  I wasn’t to be tested again to the end of the second cycle on 29 December and will shortly find out the results. Started my second cycle, no GVHD or major reactions so far, the boss thinks if GVHD hasn’t happened by now, it probably won’t. More bad news in a weird way.

21 December

Suspected urine infection with associated high temperature. Was reviewed in the Haematology day unit and discharged with antibiotics rather than being kept in. Phew! Some good news, the Adenovirus test was negative and the CT scan of my chest was clear in the sense that the persistent cough I have had for the past 4/5 months wasn’t caused by GVHD or anything else however it did show myeloma deposits in the cervical skeleton but they may have been there for a while and I’ve still got rhinovirus.

29 December

Started my third cycle and will find out the results of my light chain test probably tomorrow if they are back from the lab in time. I have been anxiously waiting the last 6 weeks for this result but today I feel strangely calm about it.

31 December

Clinic appointment………………………………..??????????????????????????

This is the post I have been too fatigued, depressed and anxious to write as I struggle to come to terms with this relapse less than 7 months after my allogeneic transplant and all that I have been through. I knew that myeloma would come back but hoped for longer. I can only write this today because I’ve got a little more energy and inclination from the dexamethasone. I am also aware that this makes painful reading, another reason for putting it off and that I don’t know what to say to people about how I’m feeling and I suspect most people don’t know how to respond. I think I just want to be able to express my feelings in their entirety, the good, bad and the silly and be listened to. More of this maybe another time.

My fears now are not that I will die of transplant related mortality although there is still a 15 to 20% chance that I could in the 12 months post transplant but more that I will die from disease progression, that the treatment will not work as the myeloma becomes more aggressive and I will run out of treatment options quite soon. I don’t think I am afraid of actually dying though as Woody Allen says “I don’t want to be there when it happens!”  What I fear more is what my quality of life is going to be like in the interim and whether I will be able to do the things that matter to me. I fear having regrets. So far I have found the treatment so gruelling both on my body and mind (especially the dexamethasone crash for 3/4 days), I am barely able to find the energy to do or concentrate on anything due to the overwhelming fatigue, low level infections and insomnia. My mind swirls with crap and I can’t do living in the present very well. I am neither feeling positive about my future or strong, more a sense of failure. I certainly do not want to be told to cheer up, stay strong or be positive. I think my views on being positive are already known to most of my readers!

This time of year also has so many disturbing memories for me too, being 5 years since I was diagnosed, the kidney failure leading up to that and my first relapse around December 2012. This year was the toughest yet, got to say that was mostly to do with dex withdrawal but taking them on 23rd December gave me the energy to bomb down the motorway to Somerset where I spent Christmas with my sister and family. I had pre warned them that I would be tired, grumpy, withdrawn and irritable. I think it went ok and I managed to retreat to my bedroom when I needed to without feeling under pressure to be merry but finding enjoyment in being with my family, especially my lovely 8 year old niece who outclassed me at Mastermind (the old code cracker game, not the TV quiz).

Anyway I am feeling tired now but pleased and relieved that I have finally got round to doing this post. There is a whole lot more that I want to write and explore but that will hopefully have to be for another time.

In the meantime I wish you a happy new year.

“For last year’s words belong to last year’s language
And next year’s words await another voice.
And to make an end is to make a beginning.”

TS Elliott