Another post where I start writing it before I have all of the facts. I actually felt physically sick from my appointment yesterday. More worried than I’ve probably felt since I was first diagnosed back in 2009. I want to be honest but I’m actually quite scared about what honest might look like.
Yesterday, my consultant told me 2 things that weren’t great. He told me the lesser of the two things first: My stem cells – not enough were harvested back in 2011. Not a huge deal. It means I have to go through a stem cell harvest again (which I hadn’t wanted due to being really ill first time), but the process is easier at the QE with them not making you have chemo – just the G-CSF injections (these stimulate your body into making more stem cells).
So whilst this wasn’t the news I’d wanted after months of waiting to hear, it also didn’t feel like the end of the world. I could still harvest in March / April and have my transplant in April/May. This was scenario one.
However the second thing was: My Paraprotein levels look like they’ve plateaued. Now this could be ok if they decide they have only plateaued and aren’t rising. But his fear is that actually, they’d like them to be lower than what they are (9.4), and that if this is the case, they would like me to have some extra chemotherapy to really blast them before a transplant. This wouldn’t just be chemotherapy like I’ve been on for the last six months where a lot of life has been able to continue. This would be me on a cocktail of high dose drugs (called DT-Pace) that I would be given 24/7 for 4 days, and where it could take up to 28 days to recover (in hospital). This would probably be repeated at least twice in the hope that my paraprotein would decrease. Then I’d still have to go back for the Stem Cell Transplant after this where I would definitely be in hospital for 3 weeks. This DT-Pace would result in an earlier hair loss and being pretty poorly. And would really disrupt everything for the kids, and for Nick for an extra 4 months or so.
But what I’m really scared about is that it would mean that I’d be on my third line of treatment. With myeloma, every time you go down a different treatment route, you are getting closer to running out of options. First and second aren’t the end of the world. Third probably isn’t either. But if my myeloma has mutated that much, it might not respond to third line treatment either. And is less likely to give me as deep a response.
I have spent the last 8 years becoming a ‘glass half full’ person. I’ve tried so hard not to let myeloma dictate who I am, what I do, or allow it to negatively consume me. I think I’ve succeeded. But this is all very scary and I am back to that feeling of helplessness and a fear of what might happen in the future. I am so scared I won’t see the kids leave school, or graduate. Will we get to finish the house that Nick and I have been lovingly trying to renovate? Will I reach my 50th – something I took for granted even when I knew I was relapsing. I never thought I might not actually reach it.
I know this might be a tough post to read. Believe me, if it’s tough for you, it’s even tougher for me to live it. And for Nick.
So bear with us at the moment. We’re trying to work out our priorities. We’re trying to make the right decisions – for the four of us first and foremost. But then for everyone around us. And we don’t want to give up – there’s a long way to go.
So I’ve now been on treatment for 6 months and I am ridiculously fed up with feeling exhausted and good for nothing for 3/4 of the week. What is worse, is that my figures for the last 2 months haven’t improved, if anything, they’ve gone up ever so slightly. We’re still hoping that’s a blip but it does make you wonder why you put yourself through the grimness of chemo if it doesn’t do what it’s meant to do.
I shouldn’t moan. (But I will).
Other people have it far worse than me. Their side effects are worse (or they say they are!), they suffer with bone issues on top of all of the chemo treatment, they have other significant side effects or additional complications that make it worse.
But I just hate not being able to do the things I normally take for granted. Some days, I haven’t even had the energy to walk Marley. Others, I can’t make dinner for the kids and they have to do it themselves while I’m asleep on the sofa. The ironing piles up to the point the MIL offers to do it. I can’t really work now as I can’t focus on it and I don’t know when my bad days will happen sometimes, and working, even in my job, can take it out of me. Sport, and especially netball has had to be paused. I can’t go out more than one day at the weekend and even that, exhausts me the next day. And then when I do feel well, I do silly things like wallpaper stripping that totally wipe me out afterwards! That’ll teach us for continuing the house renovations right up to transplant date!
Basically, my whole life has pretty much gone on hold, and its a total drag if I’m honest. I’ve gone from feeling (even if I wasn’t ‘myelomawise’), 100% fine to feeling like I’m about 50% most of the time. It’s a strange concept taking drugs that make you much worse before they make you better. I know when I get to the transplant I’ll feel like 0% for a while, but it feels like the journey moves homeward at that stage. At this moment in time it still feels like I’m touring with no idea of what direction I’m going. Maybe I’ll feel better once I have a transplant date in the diary.
Anyway, I’m ok so this really isn’t a call for sympathy. Last week I was REALLY fed up, this week only semi fed up (at the moment). Today I feel ok – I normally do on a Monday until late evening…that’ll be the devil steroids (although they seem more under control now and the sleeping tablets help counteract that side of them too). Wednesday and Thursday are my worst days normally. And I just have to make the most of the weeks where I don’t feel bad on a Tuesday or Friday….I never quite know. Perhaps I need to avoid that wallpaper stripping in the house….but I get so bored if I don’t do anything!
Enough of the wingeing though. On a positive, my friends in Belbroughton arranged a brilliant ‘no frills’ disco for my #50KB450 at the weekend. It worked brilliantly, hopefully wasn’t tooooooo much work for them all, and raised £500 for Myeloma UK and my target. And it was loads of fun!!
It will take us over the 10% mark which is great! If you want to see an update on what has been going on just pop to my #50KB450 tab at the top of this page. The next event is that Deb and Brigitte are doing a 3 hour body combat event in Stourbridge on the 29th Feb.
Finally a big Happy 18th Birthday to Holly for Wednesday! She has really generously asked friends to donate to her fundraising page for #15KB450 instead of presents – not many 18 year olds would be that selfless! She’s also doing the 2020 challenge and running that many miles in 2020….mental! If anyone else would like to support her, it would obviously be great!
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!
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!
As I started this blog this morning I was taking a wide variety of drugs and cocktails!
Daratumamab – immunotherapy drug
Velcade – chemo drug
Dexamethasone – evil drug – should not be allowed past go. Ruins relationship, friendships and more!
Lanziprazole – protects stomach…I think
Co-trimoxazole – godminly knows, I just take them and hope!
Pregablin – reduces impact of neuropathy in feet, calves and hopefully is reducing pain in back.
Colosevelam – deals with mile-bilemalabsortion – don’t look that condition up if you’re eating!
conjugated oestrogen – for early menopause that kicked in at 35
Sertraline – for the depression that can’t help but find a homely place in our house with everything else that is going on! My saviour
But today I’ve been joined to another regime. And today……drum roll……-another one is joining the ranks in the form of ZOPICLONE – a sleeping tablet. And it’s already made me spaced out and unable to hold a straight line! Hoping I’ll be ok for tomorrow as driving to oxford to visit my dad!!
I’ve also been given next week off velcade and Dex so we can have some time where I’m fit enough to do some things. Hurrah! Bloody fantastic! Might even have a little topple for new year!
But it made sense to try as I’ve only been getting between 1and 4 hours on a Monday with Tuesday slightly better at around 6-8 hours. But I feel awful between Tuesday eve and Friday eve and it’s miserable. If sleep is anything to do with it, I’d like to vaguely enjoy Christmas Day! We’re cooking for 6 but hopefully will be organised enough we can look to the guests to help nick to wash and clear!
Don’t overdo it – it’s only one day
If you burn anything hide it and pretend you never had it on the menu
If you burn anything remember you’ll be eating twice your body weight for 6 hours solid so will be totally grateful it was one less thing to eat
When you look at yourself the next day and wonder why you ate everything you knew will make you fat, and a month to get off the hips, please don’t bore us all with your plans for the gym!!
When you say ‘I shouldn’t’ when offered that extra drink….don’t if you really don’t want to …. but if you do….bloody do it!
Right I’m jibbering rubs is hand want these tablets to send me into a deep sleep! Wish Me luck
Anyway, can’t see me writing again for a few days so wishing all my friends, family and general subscribes a VERY HAPPY CHRISTMAS
I haven’t written properly for a while. Partially as I’ve been busy trying to be organised for Christmas (just in case I get ill!), but largely because there hasn’t been an awful lot to say. Which has to be good news in the world of chemo and myeloma.
So I’m sat here at the QE in Birmingham, trying to make the most of my time waiting to see my consultant. For anyone who doesn’t know, it’s my standard monthly check-up. We tend to talk about my numbers, I ask the questions that have been building up, and then I leave.
We’re getting closer to these meetings having a bit more substance to them though. Who knows….maybe even today’s will have more to say. But the idea last month was that we’d start talking about my transplant in January, with the idea that I’d be having it in March / April. I’m hoping that’s all the same, although there was a slight thought that perhaps my numbers are starting to plateau a little….i.e the drugs may not be doing quite as much now as they had been doing. That’s my main question for today….what would that actually mean if they’ve stopped working.
The idea on DVD (darathumabab, velcade and dexamethansone) was that I’d be on it until the transplant, and then after the transplant, would stay on the Darathumabab as a kind of maintenance therapy…..well I think that’s what he’d planned! But if it has stopped working, I assume that carrying on with the Dara won’t be an option and that I won’t be on any kind of maintenance. That’s slightly unnerving as I had maintenance therapy last time and felt it really helped towards my 8 years of remission. I desperately want that long again. But maybe that’s expecting too much. I must look into what the new figures are for remission after a second transplant. It used to be that they expected you to get half the time you got for your first, but I think that’s old news. I know people who’ve had far longer from their second transplants, but I would also imagine that if you have people like me who had maintenance first time round, that you could still get less time from the second if you don’t get to have maintenance.
So I saw my consultant yesterday and the good news is that my numbers have decreased even further from 11.2 to 8.6 – a brilliant decrease and it means those drugs are working (and perhaps it’s worth feeling rubbish most of the week!).
The bad news is that my consultant got it wrong when he said that I could come off the velcade and dex in January. Apparently I need to stay on them until March, and after that is when I’ll need a couple of months without them before my transplant (basically, they’re pretty toxic drugs and they want them out of my system). So it now looks like my transplant is more likely to be May/ June rather than the March/April that we thought.
I can’t decide if I think this is good or bad news. It’s definitely bad that I’ve got longer on the velcade and dex…they both make me feel fuzzy, exhausted and even sick at times. I’d been hoping I only had weeks left of it. But, the longer I wait till transplant, in some ways the better. Every month we seem to see developments in the treatment of myeloma, and we just don’t know what a month here or there might offer me. Revlimid, the drug I had as maintenance therapy last time round, but on a trial, may be available from October next year. But you have to start it within 3-4 months of your transplant. So if I can postpone my transplant, just possibly, I might be eligible to give it another go! That said, I might be told I can’t have it anyway!
I suppose if I’m honest, I’m just a bit fed up of feeling so shattered. It feels harder at this time of year too when everyone is enjoying a social life and I’m asleep on the sofa by 6pm. I’m slightly dreading Christmas Day and New Year as they both fall on my worst days of the week. But I want to be excited about them and I want to organise all the things that we have done and make it special for the kids and nice for Nick. I wish the drugs could all go on hold over Christmas and that I could just feel normal again for a few days. Thank god my temper seems to have calmed a little! That’s the only positive thing. I’m at hospital on the 22nd for an MRI to check out my back, the 23rd for my infusion and chemo, the 30th again for more chemo and then on we go. It makes me feel tired just thinking about it all.
Anyway, I think I’m just tired today so hopefully I can gee myself up a bit tomorrow.
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
I thought I’d make the most of my hospital day to update my blog.
It’s been a while since I wrote, and that’s been for good reasons – whilst we didn’t manage to get away for a nice hot relaxing holiday (too expensive at half term!), we did manage to get away for a week to Scotland. Sounds straightforward, but I did have to get agreement to put my treatment on hold for a week.
I have to say, that was the best thing ever. It sounds ridiculous, but whilst I knew that a lot of how I was feeling was due to the drugs, you do start to question whether a lot of it is an excuse….was I making it easy for myself to be grumpy by blaming the drugs? But it became clear on my week off, just how much it was the drugs impacting me. I was so much calmer, much less ‘tetchy’ and much more happy to let things lie. I felt good too. Not so tired and my taste came back.
It was absolutely lovely and we certainly made the most of it. We started off at a forest cabin in Strathyre…..walking, cycling, eating and drinking! A hot tub was a welcome chance to have quality chats with the kids and really get back to the basics. We even found time for a game of Monopoly and a bit of scrabble! We then went on to Edinburgh (with a small distillery detour for Nick!) where we traumatised Rebecca with the ‘Rocky Horror Show’ (bad parents – had forgotten how risque it was!), did the Camera Obscura, a tour under the City, and walked up Arthur’s Seat (well the footstool next to it ) By the end of it, when we left, I was definitely ready to come home for a rest. But it was a fabulous few days away that had been much needed for us all.
The other thing that we did while we were in Edinburgh was to go and visit the Myeloma UK offices and meet the teams! I’ve been fundraising for them for nearly 10 years now and never been up to see them so it was the perfect opportunity. I was going to go on my own, but then our son, Sam said he wanted to come too. So all four of us went along. It was great to see them and speak about all the work that they’re doing! What was really amazing though was that Sam was totally inspired by the visit and has decided to do his own fundraiser towards my #50KB450 – he’s now chosen to do his own #15B415 where he is doing 15 challenges to raise awareness and money for Myeloma UK. Within 24 hours he’d blown away his initial target, so he’s really happy already! If anyone can help him with any challenges, please do! Even if it’s just to help tweet about it that would be great! Feeling super proud of what he’s doing as he’s doing it with very limited input from me!
While we were at the offices, we were also able to talk about an award that I’d been nominated for….and for which, I’m excited to say, that I won as ‘Helpline Volunteer of the Year’ for my work with Myeloma UK. I didn’t go to the ceremony, partially because I am trying to limit how much I do with my tiredness, but also, if I’m honest, because I really didn’t expect that I had a chance of winning it! I was totally gobsmacked when they told me, but very proud! If you’re interested in knowing more, there’s a link here: https://www.myeloma.org.uk/news/helplines-partnership-award-success-for-myeloma-uk/
What was also great was that just before we went to Scotland, I had seen my consultant for my monthly catch up. My numbers are continuing to reduce….now 11.3 so a nice steady decrease. They’ll be looking for that to go down to as close to zero as we can do but it’s halved now and I reckon I’m around half way through the initial chemotherapy treatment. The other news my consultant gave me was about those timings. Apparently once I get to the end of January, I’ll come off the velcade and the dexamethasone part of the DVD. Since those are the drugs that I ‘think’ are giving me the worst side effects, I’m over the moon that there is an end in sight for those. I’ll keep going with the darathumamib infusions (once a month), but I’ll basically come off everything else.
This will give my body a chance to recover for a couple of months before, drum roll, I have my Stem Cell Transplant (No.2). I’m so relieved to have an idea of when this might happen now. I know things can still change but not knowing when it might happen was really frustrating me and my control freak tendancies. At least now I can plan how life might look for the next 6 months, even if I have to change it down the line. Strange really. Most people want to put off these things but I just want to get through the transplant with the hope that life WILL go back to normal in the months afterwards. I’m trying not to wish time away now – Nick is right that we should be enjoying and making the most of it – but I do want to get past the transplant as I know how awful that will be.
Last night was a Dex night. I often don’t get to sleep till 3am on the first night, but now I’ve added sertraline back into my concoction of drugs, I thought I’d go to bed at a relatively normal time.
I actually got to sleep pretty fast! But after that it was such a surreal night and genuinely felt like I was working my way through my Facebook / LinkedIn timelines!! It was all I could do to stop myself getting up and doing the things I was having go through my head.
What was weirdest was that it wasn’t really a dream either.
I’m thinking I need a break! Hopefully by the end of this month I’ll have cut down my work quite significantly which will mean that I can take a bit of time out. I might even come off Facebook for a few weeks if I can set up my work to run without me!
In the meantime, I’m grateful for a semi normal nights sleep on a Monday!
This last week has been a really hard one for me. And probably for the whole family. And it has made me face into a few things about myeloma that I think I have managed to bury over the last few years. Things that have meant that I’ve sobbed, and shouted and sobbed some more. It is the biggest bastard disease in the world and I don’t really like what I’ve had to realise this week.
In my previous posts, I’ve said a lot about dex and the impact that this awful steroid can have on life. This week has been such a tough one and I’ve spent far too much time just feeling really sad and low and on the verge of tears. Or ready to snap for no reason whatsoever. It’s been harder still as Nick is in a new role at the moment and is away more than normal – something I totally support and understand, but something that makes it hard…..for both of us…..when I’m in such a fragile state. I miss his support, his advice and his companionship when he’s away. And with what’s going on, it doesn’t take him being away for long for us to lose that connection which is our strength together. Talking over the phone just isn’t the same when you know someone can’t do anything or that you make them feel worse.
Luckily, because he is the most caring and ‘in-touch’ man I can think of, he is just amazing at pulling us back together as soon as he is home. So Friday night we just talked and talked. About how sad and low I was. How hard I was finding the treatment. Our difference in how we view whether we want my transplant sooner or later. Why we have those differences. God, just so much.
I’ve been very much focused on just wanting to get through my treatment, my transplant and getting out the other side. With the view that if I can keep well and survive (yes it is still about survival), the chemo and the SCT, that then I will get my life back to normal like last time, and that we can have another 5-8 years of remission by which time Car-T therapy will be in place, there’ll be a cure for myeloma and I’ll be able to live into old age with Nick. Easy as.
How on earth could it be any different to that?
I think I’ve been living in dreamland though. It might be the downside of Nick now working with Car-T (not for myeloma). He really understands it now, and understands myeloma in a way that perhaps we didn’t before. Although, that said, I think that he perhaps hadn’t buried his head like me over the past 6 years. Funny isn’t it….I never thought I was burying my head, I thought I was being positive and upbeat….and maybe it’s the only way you can live with this bastard disease. I think Nick was constantly living with the reality in his head – the fear that he will be lucky to have me in the years of retirement. And I genuinely, (fool that I am), had thought that all the advances in myeloma treatment, meant I would be there with him. How different could two peoples thinking be?!
So what is the reality? Well, Car-T is still a way off for myeloma patients….at least a couple of years probably. And it sounds like it perhaps isn’t quite as straightforward in its use as with other blood cancers. Something to do with how difficult it is to deal with the plasma cells I think but don’t hold me to that. And it sounds like ‘THE CURE’ isn’t quite the cure that I had in my head. Like with anything, they won’t know about cures until time takes its course.
From what I can understand, after this set of treatment, assuming it all works well for me (which we can’t take for granted), once I relapsed for a second time, assuming Car-T was even available to me, I would go through that if I was eligible. But at the moment, whilst it works well for 50% of patients, it doesn’t for 50%. That’s tough. So then, you’re onto fourth line treatment and by this stage you have less options as you’ve already gone through loads on the journey to here. And your body is weaker anyway. And the myeloma has often gained strength. And if I was to get lucky with that Car-T and be one of the people that do well on it….well we still don’t know how long it will work for, whether the myeloma will find a way of surviving it or mutating.
In reality, I can’t get that far ahead. We don’t know how I’ll respond to this treatment and that is the first step. We can only hope that I get something close to what I got last time in remission…but we know we can’t take that for granted. Then we’ll just have to wait and see. See what new treatments come up. See how Car-T develops. There’s no point second guessing, but I suppose what I’m trying to say is that my positive thinking might have been ever so slightly on the ‘unrealistic’ scale – and I’m not saying this to be negative, but to help people understand why this disease messes with my head so much! And why I struggle so much at times.
It’s all quite complicated. I don’t really understand it all. But I understand the fact now that perhaps I shouldn’t be taking my current health for granted. Yes I’m shattered. Yes I feel rubbish about 85% of the time. But, I’m not in hospital, I’m not having negative reactions to the drugs that lay me up, and I’m not bed-ridden. I’m doing really well in comparison to so many people going through this treatment.
I need to find a way of enjoying this next 6 months, even if it is on a slightly less energetic level. We’re looking into counselling and mindfulness, but Nick also reminded me that I made the slightly strange decision to come off my anti-depressants just before I started treatment. I’d done this based on the fact I thought one of my other drugs was handling this aspect of my care, but I think I was wrong. It was like a lightbulb went on when he suggested I go back on them. What on earth had I been thinking? I’m such an advocate of using them when needed and not being too proud, yet there I was taking myself off them! So, back on the sertraline as of yesterday and we’ll see how that goes this week.
Today is a good day. Yesterday was a good day too. I don’t think it was the sertraline – it’s too soon. I think it’s because Nick and I had those BIG conversations that were hard but necessary. We talked again about things we’ve only skirted over for the past five years. We were really honest with each other. And as hard as some of those conversations were, it has allowed us to acknowledge what we both need, and what we’re both dealing with in our heads. Our strength has always been our communication and our honesty and I think we’re stronger again now we’ve faced into, and talked through what the future might look like.
I’m not sure what that means for me. I’m not sure whether it’ll make it all harder for me being open to all of the above. Or whether it will make it easier to grab moments, live positively and make the most of the next 6 months. But I’m going to try. For the sake of Nick and the kids….and for me. Being sad and unhappy is sooooo draining and somehow I need to find a way to manage it all better….but I know I’m one step towards that with Nick holding my hand.
I’m not very good at singing the praises of our children. I think it’s historical and probably isn’t helped that it was how I was brought up, but I’ve made a decision that I need to change that. And I’m going to start now. (And don’t worry we’ve told them too!)
I am SOOOO proud of them both!!
Recently, we have had letters from the High School, about both of our kids and how well they are doing.
For Rebecca, we have had two within the past week! One regarding her amazing fundraising where she raised over £1000 by walking the 3 Peaks in 24 hours for her Romania community project that she is going on, alongside her contribution to the school in general, and one for her amazingly helpful input at parents evening.
For Sam, we had one about how he had been really inclusive and kind and helped the new Year 7 students to settle into the school….something I can promise doesn’t happen with all of the kids!
I know that these things might seem small to some, but with everything that the kids are having to deal with at home, I am so proud that they aren’t falling to pieces at school, or using it as an excuse to be quite inward thinking. They are still keeping hold of the values that we’ve tried to teach them over the years, namely to think of others as well as themselves. And don’t get me wrong….I totally wouldn’t blame them if they had become more self-centred with all of this.
We do have two amazing children. They are so kind, and so giving and I feel really blessed to have them. On Wednesday, I was struggling and a bit teary while Nick was away and Rebecca was out. Sam spotted it straightaway and came and gave me the biggest hug in the world….he knew what I needed! And even Rebecca, someone a little less tactile than Sam, seemed to know I needed more from her when she got in later in the evening…she straightaway gave me a big cuddle….and I can promise you, that is not the norm from her.
They are living with such a hard situation. I think that sometimes we take it for granted after all this time, that our family is living with the Big C. With myeloma. With a big cloud hanging over our heads. I know that I certainly take it for granted that it is always in my mind (especially now I’m back on treatment). It impacts so many of the things that we do, whether it is the every day decisions of what to do, the holidays we can or can’t go on, whether the kids can join clubs (Can we get them there? Can we get them home?), even, whether they can go somewhere with their friends.
But yet it is so easy to just feel like they, in particular, should just get on with these decisions without challenging them or feeling that they are unfair. Poor Sam even had to deal with a science lesson this week telling him that stem cell transplants were a cure for cancer, especially bone marrow and blood cancer – not easy when he knows there is no cure for myeloma. But again, I was so proud of him for coming home and telling us about it. Talking about it. Not bottling it up. It’s so important.
They are the most special children. I love them so much. We’re so very lucky.