So tomorrow is my birthday and I’ll be 44!! Who would have guessed I’d get this far along the line – certainly not me when I was diagnosed nearly ten years ago.
And honestly I am so, so grateful to have got this far with relatively few problems or setbacks. But I can’t help but be slightly saddened this year and the pessimistic part of me (that I don’t often allow out with my myeloma!) is worrying that it could be my last healthy birthday. Totally ridiculous and without substance as I have as much chance of a good response to any treatment , as I do of anything else.
But at the same time, I’ve had 2 myeloma friends die in the past week and another, just tonight, has let people know that his body is nearing the end. I know that myeloma sometimes does a u turn in now it responds for people. Just because you’ve responded well in the past, doesn’t mean you’ll respond well in the future. It’s all a bit of pot luck!
So, I’m going to try and have a great birthday – a day out with Nick in Ludlow tomorrow (looking for old furniture for our renovated living area) and then a weekend away with my old school friends and our families. Hopefully lots of good food and good wine!
And for a few days, I’m going to try to put my insecurities behind me!!
I thought I’d write a quick update for people on here as it’s been a busy couple of months since I explained about coming off maintenance therapy and I haven’t really had a chance to let people know anything. We’ve been busy renovating the downstairs living room and thankfully are only a couple of weeks off completion now!
So, my last medical update was about being taken off Revlimid (my maintenance therapy). I’ve been off it for 3 months now…the first results weren’t too bad and my figures only went up by 0.5. Last month though, they went up by 2 which is faster than I’ve had it change over the past 7 years. It means that next months figure will be really important in my consultant making the decision as to what happens next and whether I start on the Myeloma XII trial which I have been given information on.
It is a really strange one – to feel that they took me off a drug that was keeping my progress slow and steady, resulting in it speeding up and potentially me needing treatment even sooner! I don’t quite understand how that makes sense for anyone except the drug company who no longer have to fund my drugs (they payed for them whilst I was on the Myeloma XI trial). I am wondering about challenging the system and asking for them on ‘compassionate grounds’ which apparently you can do. I need to look into what that means and how I would go about it, but surely if you can prove that a drug keeps you in some form of remission, that is more cost effective for the NHS than paying for a Stem Cell Transplant for me?
So, unless I can arrange for that to happen, it looks like I may well be back on treatment by the summer which would suggest a transplant at Christmas – not really what I want at all but if by getting in there early it stops me from suffering any type of bone or kidney damage, then I’ll have to go with it. We’ve thought about it lots over Christmas, as you’d expect. I maintain the fact that I’m majorly lucky to have been in remission for so long, and to have avoided complications. But, I’m absolutely gutted that, from being a healthy 43 year old who plays netball, racquetball and runs my own business, I will have to give up the sport etc and make myself so ill that I can’t function for 4 – 12 months. What a choice to make. It sounds strange, but in some ways when people are ill or suffering symptoms, the decision to go into a chemo regime feels like it might be easier.
The kids do know a little of what is going on. We weren’t going to tell them much until we knew I needed treatment to start, but then Sam started asking very specific questions about my health. We’ve always promised to tell them the truth and so we had to tell him that I’d been taken off revlimid. Of course that led to questions about the ‘what next’ so they do now know what could be on the cards. I think perhaps that’s for the best anyway – it gives them time to get their heads round it and I’m sure they’ll need that just like we do. It also means that if they stumble across my blog, that they won’t read anything on here that comes as a shock to them.
In the meantime, we’re taking the time to regroup and work out how 2019 might look for us. We had hoped to go away somewhere, but I think now, we will look at camping and prioritising getting our bedroom turned into an ensuite to help with the treatment process. I’m so pleased we’ve nearly finished the renovation of the living area as that means we have somewhere to enjoy and to have as ‘our’ part of the house (the rest is very dated). On top of that, it’s time to get back into doing things as a family….the poor kids have been very neglected during this whole house business, so we’re looking forward to more dog walks in the Clent Hills, more board games and generally more time together.
Next update probably won’t be until after the next lot of bloods…..I’ll be counting the days 😦
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
I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-)
Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve been on maintenance since then until November 2018 and am now waiting and watching....again.