It’s the 2018 Christmas Letter, courtesy of the lovely Nick!

To our family and friends

What do the following things have in common? This newsletter, prison sentence for burglary and the average life expectancy of a Gnu – that’s right – eight years! This is CNL 8 from the Gascoynes and I can say with all honesty that I write them with the same level of excitement, passion and pride as I did with the very first one……none!

So in the year of Brexit, Royal weddings and the Donald what have we been up to? Are you sitting comfortably, then let me begin.

During a year of living in Merion¹ Lodge we have spent many happy hours in the garden planting, erecting, removing, digging, designing and burning. Highlights have included selling 20 year old hot-tubs to Lithuania, pumping out a flooded cellar, practicing our lumberjack skills and dry-stone walling.

As the nights started drawing in we moved indoors and began our renovations with a spare bedroom before biting the bullet and tackling the kitchen, living, dining room holy trinity. At the time of writing we are plastered (normal Sunday afternoon I here you mutter), floored and semi-painted with kitchens and windows to be started and completed before Christmas. It has been a huge undertaking project managed by my darling wife and with no small input from Teddy G who has offered both expertise and muscle – particularly important as I buggered off to San Francisco for 10 days in the middle of proceedings. It never fails to amaze me how much gets done when I am not around to slow it down! Very excited to see this first stage finished and to share it with friends and family in 2019 (although you will be expected to bring wine and a starter or pudding).

On the holiday front, this year we spent a few days in Dartmouth at Mike and Ruth’s new gaffe before camping for the first time in my adult life in Cornwall and I have to say we had a fantastic time – beaches, seafood and cider (these are not Gwyneth Paltrow’s children but highlights of our Cornish adventures) and visits to St Michaels Mount, St Austel, St Ives, Tintagel and The Eden Project with dog in tow, before meeting up with Ma and Pa for a few days in a Devon Cottage. It was great to have time the five of us and to share time with our wider families.

Rebecca turned 14 in October and has chosen her GCSE options – time passes so quickly! – she has gone with History, French, Food tech and Business in addition to the mandatory bits and says she has made some good decisions as she repeatedly secures the highest number of achievement points in her form!

Away from school she is in her final year at guides and has completed all the necessary work for their highest honour – The Baden Powell award. She has worked consistently hard for this and we are super proud.

She has also put in many hours practice for her sweet eating badge and dropping the wrappers around your bedroom award – well done Bex. She is an impressive young woman.

I mentioned in CNL7 that Sam was on the waiting list for XBOX amputation which happened earlier this year. Initially things looked good and the surgery seemed to have been successful, but I am sorry to tell you that more recently he has contracted a serious re-infection of Fortnite.

If you are not familiar with this very contagious condition, symptoms include grumpiness, failure to see how much time has passed, inability to do anything else if not on a screen and the belief that all your friends get to play far more than you do and your parents are mean and don’t like you. We are planning to prescribe den building, football and conkers but in truth we don’t hold out much hope – the illness is just too powerful!

Having said all that, Sam does manage to maintain a balanced approach to life and impresses with his attitude and ability. Committed to improving his football at West Hagley, working hard on his wicket-keeping and batting for Belbroughton and having weekly tennis lessons, he loves playing and watching sport. Musically he practices both acoustic and electric guitar and was on stage in the Summer as part of a Highway to Hell ensemble, and is currently preparing for the school performance of Beauty and the Beast. Academically he continues to do very well and his most recent report was glowing. He is an impressive young man.

Last year I introduced you to the newest addition to the family, Marley₂. As I sit here writing, I would like to quote Mrs G verbatim, showing how quickly Marley has become an irreplaceable member of the family and the Byronesque eloquence of my better half:

“You stinky bugger dog, get down, I don’t really want you near me” (I think she was talking to Marley – not 100% sure though).

Friendly, good looking, full of energy and regularly stroked by older women when out for a walk, I have had a great 2018 and Marley is OK too. He had a challenging first part of the year after an argument with a van but I am genuinely happy to say he seems to be mended and back to his cheeky, jumpy self. Even my Mother loves him – never saw that one coming!

And now to the leading actor – my darling wife. Deb continues to amaze me with her work ethic, compassion, ambition and love of family and friends. 2018 has seen her drive forward her ‘Gascoyne Solutions’ business, project manage the house renovations, train a cheeky Cockapoo – then nurse it back to health and re-train, keep the house, play play netball and racketball and keep the rest of us on the straight and narrow. Despite all this, she still manages to find time to sample all new Malbec brought to the UK market and sample gins like a professional – very impressive. It’s been a quiet fundraising year and I’m trying to ignore her comments on new ideas for 2019!

So what does 2019 hold in store? Phase 1 of renovations to be completed and take some time to enjoy the fruits of our labour, maybe an Irish whiskey tour (don’t tell Deb), Gascoyne Solutions drives ever onwards, Sam a teenager and Bex 15 (wtf) and lots of time hopefully enjoying friends and family.

Wishing you all a Happy & Healthy Christmas and 2019

With all our love

Nick, Deb, Rebecca, Sam & Marley xx

¹Merion – from the ancient Cornish for Money Pit.

₂Marley – named after St Marlon, the patron Saint of Vets retiring early and buying a holiday home in Barbados

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Beginning a new journey?

I’m writing this early in November but won’t be posting it for a few days. The reason being I still haven’t had a chance to talk to Nick as he’s in San Francisco with work and I don’t want to burden him with anything. But I wanted to get my initial feelings down while they’re fresh.

On Thursday, I had my routine hospital appointment. Every month I have to go as I’ve been on a trial where I’ve been given a drug called Revlimid as a maintenance therapy. I’ve now been taking it for 7 years and I honestly believe it has helped to keep me in remission.

I knew when I walked in the door that something wasn’t quite right. My consultant wasn’t quite as smiley and I could see a graph on his desk rather than my usual prescription script. It’s not necessarily a major concern but now that my paraprotein (which is what they use to measure my myeloma) has gone over 10, the clinical trial has refused to keep giving me revlimid.

I’ve known the day would come but had sort of imagined that it was still a while away and that I’d see some more rises in my paraprotein first.

So, what does it mean? Well it seems that we’ll still be playing the waiting game for a while. If it only rises by 1 every couple of months nothing will change. However, my consultant has said that coming off the revlimid may result in my figures rising faster. If that happens, I’ll be back to treatment. Now that wouldn’t worry me normally apart from the fact he gave me the details for a new trial! Which suggests to me that he’s expecting me to need this treatment sooner rather than later! Although I hope I’m just reading into things.

I don’t really know how I feel. When he first told me I was very much thinking how lucky I’ve been to have this long in remission. How I shouldn’t be too upset as it’s all been so good. How I’ve benefitted in a way other myeloma patients can only dream about. But the last couple of days I’ve struggled a bit. Memories have come back of how much weight I put on from chemo … and even more, how wretched I felt after the chemo and the transplant. I’ve enjoyed so many years of being healthy, I don’t want to go back to that. I’m nervous of what it’ll mean for the family. For my netball and racketball. For my business. For everything.

IF all goes as well as last time it’ll be 2 years of treatment and recuperation. But I’m a bit scared to believe it will be that easy a second time. Myeloma doesn’t tend to be predictable and tends to come back differently each time.

But I know I’m getting ahead of myself. The next few months will be key to seeing how things progress. So keep your fingers crossed for us that the revlimid was more of a placebo than anything else, and that the next few months go ok.

While all this is going on we’re bang in the middle of renovating our house. In the week that this has all come up, not only has Nick been away but we’ve taken 2 walls down, pulled up 3 rooms of floorboards and pulled our downstairs apart! Still, it’s actually kept my mind off worrying so hopefully it’s been a good thing for it to be happening now.

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Changing Times

It’s been quite some time since I last posted – life has been really busy which is always a great sign….there was a time (and it was quite a long time!) where no matter what was going on in my life, I couldn’t help but worry about myeloma and what it meant for our family.

 

This year will be 9 years since my diagnosis. I still can’t believe that when I read it back. When I consider we’d initially read about a 2-5 year prognosis….and then thought things were good that this had improved to a 3-7 year one! And here I am, nearly 10 years on and being one of the lucky patients that has still only had one set of chemo and one Stem Cell Transplant. I almost feel like a fraud when I think about my initial fundraising messages that I gave to people. And I can’t begin to explain the guilt that you feel about surviving when good friends around you have long gone or are extremely ill.

 

This is the first post I have written in many months/ years where I won’t allow it to go to facebook though. The reason being that my daughter, now 13, is on facebook and probably doesn’t need to read all of my thoughts, fears and worries about myeloma. So, I’ve decided that I need to be more private about the situation to avoid her being unnecessarily concerned. She’s ever so private and would just worry in silence I think. And hopefully she doesn’t need to.

 

Those of you who have followed me over the years will know that Nick and I have always prided ourselves on being 100% honest with the children. None of that will change, but I don’t believe that the children reading things on a blog will help them to understand my situation as well as us sitting down and talking with them. I need the blog for me. And I suppose I just have to hope that they don’t stumble across it online. That said, Rebecca, Sam, if you do happen to start reading this, please let me know! Nothing is a secret! I know the day will come and I hope that it will give you another way to start conversations with us.

 

I suppose if I’m honest, the reason I am writing this now, is that I’m a little bit scared. My figures are starting to increase at a more regular rate than they had been. Only 3 months ago, my consultant had said he wasn’t worried about them as they were rising so slowly, that if it continued, he didn’t imagine me needing treatment for well over two years. It was like it was the kiss of death. Since then, they have gone up more in 2 months than the last 2 years. Still not really a huge amount, but enough to make Nick and I sit up and listen.

 

It’s amazing really. It feels like I have gone back to 2009/10 when we were constantly chasing figures to see whether they were high enough I would need treatment. The nerves are definitely highly strung and I am back to taking things more personally (please don’t take it personally if I get snappy at you!). My mind is going off track and I’m back to worrying about what we can and can’t plan for the future…..even though I know it’s far too early to be worrying about all of that.

 

Nick and I were walking the other week and it suddenly struck us both that the increase had started around the time we took on the new house and I started my business in earnest. The conversation stopped almost dead at this point when I realized that perhaps stress was my main cause of my myeloma levels rising. The first diagnosis came shortly after I first left the banking world, stressed and unable to cope with the level of pressure they put on me and two young children. Should I have picked up on this earlier? ‘Stress’ is a well known trigger but I suppose because I constantly put pressure on myself, I don’t always associate the two….my life is busy because I like that and I choose it to be so. I’ve loved doing my fundraising no matter how hard the work has been. But maybe there’s a difference when you choose something and know it can stop whenever you want if you need it to.

 

The reality is that I don’t feel I can (or want to!) give up my work – I’ve finally done something I’ve been talking about for years. And I don’t want to give up the house either – it really is a ‘forever’ home, no matter how much of that forever it takes us to complete it. So, I’m at a total loss as to what to do, to make life easier. I don’t want to be the mum that doesn’t let the kids have people back. I don’t want to give up my sport which I love. But is all of that totally selfish if it is what is making my myeloma worse? I really don’t know how to answer that question. I know that I can’t say no….but I don’t want to either L

 

Anyway, maybe I’m getting ahead of myself. There is no talk yet of treatment. It’s still that awful waiting game…the game that is always being played in the background, no matter how slowly, or how much you can shut the door in its face for a while. I’m sat here writing this just before I go into my next monthly appointment. Hopefully things are relatively stable this month and you won’t get another update from me for many more months!

 

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So, it’s probably a bit clearer now why I didn’t want Rebecca reading this yet. This is too much information for a 13 year old, too early in the day. It’s my general ramblings and fears – and probably irrational ones at that – I’m sure many of my myeloma friends going through treatment would tell me to just enjoy the fact I’m not there yet (and they’d be right but it’s just difficult!)

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