2023 – Anticipation of a year to come

Firstly, I just wanted to say that things are a little better. Thank you to so many people who (even though it wasn’t asked for!), sent me a message to say that they were thinking of me.

After my last post, I took some time to try to think a bit about what was going on in my head. I was really honest with my boss too and she was amazing at letting me have some space to just consider what I needed to do differently and what was making me feel so sad. So, as Christmas got closer, I was definitely in a much better place than before – I think that upping my antidepressants probably helped too!

But as 2023 begins, I’m still not looking at it as a year to look forward to, no matter how miserable that makes me sound. I’m pretty much convinced that at some point this year things will move on with my myeloma and that I will need to change my treatment…..and that un-nerves me as I honestly do (most of the time!) really like what is going on in my life at the moment. I hope that I’m wrong, I really do!

I’m not really sure what to do for the best. I admitted to Nick the other evening that I am just fed up of being on treatment. When you think about it, I have been on some kind of drugs, even if only maintenance therapy, for the last 13 years of my life. Sometimes just 5 or 6 pills a day, other times far more, and all alongside hospital treatments and therapies. At the moment, I go in to the hospital twice a month. Once to do a covid test and my bloods, and once to have my daratumumab infusion (an immunotherapy injection). So twice a week, I have to take time out of work to do that, and then make that time up.

More than that though is the way it makes me feel. For around 5-6 days every month, I feel wiped out, sick, high as a kite, cross and generally fed up. That’s nearly a quarter of the year when you think about it longer term. It’s no wonder I’ve had enough. I’m seriously considering a conversation with my consultant about what the dara is actually doing for me and whether it is genuinely likely to be keeping me in a longer remission. Because if not, why am I doing it. Why not just come off treatment and hope for the best? When time is likely to be limited anyway, wouldn’t it make more sense to be able to enjoy it fully?

But I know that Nick doesn’t want me to make that choice. He’s nervous that it would shorten my remission and mean that I ended up on treatment sooner. And he’s probably correct to be worried. In my heart, I know that is a major risk. I also know that when I have to change my treatment at some stage, that it could be for something stronger and more aggressive that gives me even less quality time or that makes me feel even sicker. And I know that I don’t want that either.

I think this is probably why I’ve been so fed up recently. Having that all going round in your head all the time can sometimes make life difficult to embrace.

All that said though, I am trying. I finally got out on my bike for the first time today in nearly a month and whilst it was tough (it’s unbelievable how fast you can lose your fitness!), it was great to be out again and made me realise how important it is for my wellbeing too. Nick and I are going to try to book a week away (perhaps Venice and Italy?) so that we have something to look forward to. I’m going to try to cut back a little at work and not feel like I have to do so much.

So here’s to the best 2023 that we can all have, no matter what life throws at us. Thank you for family and friendship in 2022 and much love to everyone. xxx

Posted in general, Myeloma | Tagged , , , , , , | 2 Comments

It’s not feeling a lot like Christmas

I’m sick of being sick. I’m sick of myeloma. I’m fed up with the pressure it puts on my life on an ongoing basis. I’m great 95% of the time, but this other 5% is absolutely horrible…and this is when I’m only on maintenance therapy. It’s miserable and it takes over everything….especially when lots of small things just tip the balance.

I think in one of my more recent posts I said that my paraprotein numbers had gone up. And they did a bit. They’ve been in the ‘7’s’ since then so all should be good. I’m relatively stable so I shouldn’t be worrying. The number of times people that say that they might not go up for ages. Or that it’s just important that they stay stable. And of course it is important. Don’t people realise that I know that. I should be happy.

But I’m not – I’m really struggling at the moment. It made me realise yet again, just how fragile my state of health is and how quickly everything can change for me and for the family. Which should make me want to be happy and make the most of things…..not to argue with the kids…..not to get upset about work or friends or family….But somehow it is doing the opposite and just making me super anxious, and now with just a few things tipping me over, I’ve gone into depression again.

I’d been so proud of how I’d reduced my antidepressants over the past couple of years to a really small dose. I know that I need them and I’m not ashamed of it at all, but I was pleased I was coping a lot of the time with very little. But in the last week I’ve had to increase them again to make sure that I can function. I don’t want to see anyone. I don’t want to talk. I seem able to function in a work capacity, but am taking things far too personally. Thankfully it’s not my supporters that see the brunt of it all….but I really feel for my poor boss at the moment though 😦

Nick tells me that I have lots going on…more than most….but really most things are the same as for everyone else…the only difference is the myeloma and by now I really should have that under control. But sometimes it is exhausting waking up every day and having to think how it impacts life that day and that week. Do I have appointments? How is treatment affecting me? Is the ache in my shoulder bone damage? Is the sore throat recurring infection that I should be worried about? Why is my back hurting? Will those numbers go up at my next appointment? I really can’t shake that one either.

And that pressure to keep going and make the most of life can sometimes be more exhausting than anything else and that’s how I feel at the moment. Like it’s all just a bit too much. I’d quite like to crawl up into a ball and just fall asleep for a month or two.

It’s not just me. There’s lots of other stuff going on too. My mother in law has been in hospital for 3 weeks (thankfully out today), the kids are being typical kids (but still cause worry), the charity sector is hard to work in at the moment, I’ve got more aches and pains that I can even voice any more (since there is no reason for them), I’m not sleeping well and I haven’t managed to get out on the bike for weeks now.

So I don’t feel much like Christmas this year. So if I’m not responding to you, it just me. Please don’t take it personally – and please just give me a bit of space. No messages needed – I’ll be fine…..just bear with me.

Posted in Myeloma | 1 Comment

Christmas 2022

So it’s time for Nick to shine once more 🙂 Over to him……

The Gascoyne Christmas Newsletter 2022

Yet another year has passed at an incredible rate of knots and despite repeated attempts to try and dodge the task of writing the Christmas newsletter, I find myself again sitting at the keyboard under the watchful and judgemental gaze of both my frowning wife and my chisel faced daughter. Death, taxes, newsletter – think I have used that line before but after 14 instalments I am sure you can forgive me a little repetition.

2022 has been a year of a sort-of return to normal (whatever that means) and some challenges too, so I will get the serious stuff out of the way before the frivolity begins! After a few years of pain and restriction Dad finally had his hip replacement op in September and as expected has taken his rehabilitation very seriously. As a result, he is now walking with a slight limp but is otherwise on fine form and doing well. Unfortunately, this has been overshadowed by Mum’s admission to hospital with low kidney function. As I write she is still an in-patient enduring a battery of tests to find the issue and begin treatment, so let’s hope by the time you read this she is at home getting better – please cross your fingers and send lots of positive thoughts and love. We love you Mum, get better soon.

Ok, now on to slightly lighter stuff – read this with a hint of irreverence and sarcasm, you know, my usual tone!

Sam is now well into his first year of A-Levels at King Edwards College – studying maths, further maths, economics and physics. We await his first report and first consultation evening with his teachers this month and he has just started to manage our expectations – here are a few of my favourite quotes:

“I think economics will be ok – I am quite easily distracted so he might mention that”

“In Physics he only asked me to leave the room once”

“Maths is going quite well”

I may need a whisky to for these chats to numb the pain!

On a separate topic I know many of you will be keen on the next update of XBOXitis. Previous attempts to separate beloved son from the machine have been largely unsuccessful, even the ‘iPhone as methadone’ approach had only managed to add a second addiction on top of the first and allowed him to be on a screen whilst visiting the bog – he need never be apart from his digital crack. Then one day, when we felt all hope was lost, he stumbled across his own cure. This cure is called Juliette and it appears that she is able to completely relieve the lad of his desire to be driving a screen and we are very happy that she has this superpower. Sam is delighted with this arrangement and clearly loves being in her company – it is great to see him smile so often.

Sticking with the Boy, he is already thinking about life after college and has his sights set on the glamourous career of Quantity Surveying. In an uncharacteristic bout of organisation, insight and effort, Sam organised a week’s work-experience at a company in Gloucester where he stayed solo in an AirBnB and worked 5 days shadowing a QS, and in modern street parlance, he smashed it. The feedback from the company was incredibly positive and they offered him an apprenticeship if he wants it – absolutely fantastic, and we are very proud of him. Feedback from the Air BnB was less glowing and the advice not to eat sausage and mash in bed was an unusual addition.

Now let us advance to the girl child who is now 18, in her final year at college, driving everywhere she can, and working incredibly hard to ensure a solid cash flow for her Australian travel plans.

Passing her driving test was a momentous achievement and a real emotional (and financial) rollercoaster for all of us! I could be tempted to retrain as a driving instructor but I am not sure I would know what to do with all the extra cash – only train drivers earn more if Elon Musks new toy is to be believed. Rebecca showed incredible tenacity in her approach and also paid for a number of her own lessons as she was utterly committed to passing, and failing the first test in August didn’t dampen her spirits too much. Even when the next test date was in 2023 she didn’t panic and just kept revisiting the website looking for cancellations which lead to a successful September second test. Well done that girl.

Her 18th birthday was loads of fun and she had 2 parties to celebrate becoming an adult (surely you’re not old enough to have an adult daughter Nick, I hear you yell). One with friends where Deb and I were ordered to vacate the family home and one with family where we were ordered to stay in the home and fill it with food and drink. We were happy to do both. Thanks to everyone who came and joined in the celebrations.

And for next year it would seem that the Aussies are calling and Rebecca is planning a long trip to see her cousins and their families down under. She has been thinking about this trip for ages and is squirreling away the funds necessary to make this a reality – working significant hours at a restaurant, a café and a golf club. Her work ethic is mighty impressive (yes – she gets it from her Mum) and she is reliable, hard working and willing to drop what she is doing to go in if they need her at short notice. Proper job.

We are very proud of them both and this period in their lives is so exciting – the world awaits them both (quickly I hope!)

Now we will move to my better half – the Morcombe to my wise, the Cannon to my Ball (a threat she uses quite regularly), the Kwarteng to my Truss – the brave and Inspirational Mrs G. Deb has had the busiest of busy years. She has worked for over a year at Brain Tumour Research and goes from strength to strength organising an Isle of Wight Randonnée, Walks of Hope, skydiving events and much more. She manages to achieve more in a 4 day week than I do in a fortnight – some things never change! Deb continues to focus on road cycling with the Stourbug group and after nearly 2 years of waiting she and niece Felicity, completed the London to Paris event raising oodles more cash and smashing her #50b450. The L2P was such an achievement as 125 cyclists completed 300 miles in 4 days and finished with a big party in Paris where the celebrated with a big end of ride party – Deb enjoyed this event more that the ride I think, and one of my favourite moments was finding her asleep in our hotel shower around 4 in the AM – classy bird.

And for me the pattern was set some while ago – family, work, house and whisky – makes me a happy boy (and reduces the size of this newsletter – woohoo)

And after a strange and restrictive few years, we were able to travel again – in August all 4 of us went to Cape Verde for a couple weeks and just chilled in the sun. Deb and I would have the morning together and the kids would appear early afternoon and Sam in particular lived a mainly nocturnal existence. We had a great time and came home feeling relaxed and rested – feelings that lasted about 12 hours!

Later in the year Deb and I spent a few days in Seville – we ate and drank and walked and talked and then ate and drank some more. Fabulous.

And on that note the blessed curtain comes down on this year’s review and we wish you all a very Merry Christmas and a fun, rewarding and exciting 2023……

With much love from us all

Nick, Deb, Rebecca, Sam & Marley (no mention of him this year….)

Posted in Myeloma | Tagged , , | Leave a comment