Deb Gascoyne

And change……

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So unsurprisingly the Coronavirus has meant a total change in our life. Where to begin?

Well yesterday I was back to see the consultant. After my numbers going down the week before last, last week they went back up to 9.2. I’m sure there must be a better word than rollercoaster! Basically it means the graph shows my numbers as roughly staying the same. Which is definitely better than them rising. Before this week, I think they would have been considering hitting me with DT-Pace but because this blasts your immune system and would put me at greater risk of contracting Coronavirus, we’ve been told that both this, and Stem Cell Transplants have, unsurprisingly, all been cancelled for the foreseeable future.

So of course our next question was, what does this mean for me. The consultant is now happy, given the current climate, to see if the daratumumab can keep them at the current level till things blow over. Great. If it does. But what if not? Whilst the previous two options are now off the table for the time being, apparently if my numbers rise, the next option would be a drug called pomalidomide. This is in tablet form and in the same family as revlimid which kept me in remission for a long time. I tolerated that well although it is likely that my neutrophils will decrease which means I will still have lower immunity- so isolation again will be key.

I have to say I’m quite relieved. With everything that has been happening, we thought it was unlikely they’d still do transplants but I was concerned that there would be no alternatives and that they’d have to leave my numbers to just increase, risking bone damage and/or kidney damage. So I’m really relieved that this isn’t the case even if it does mean the whole situation has changed again. Better a different course of treatment than no treatment, or a treatment that would put me at major risk.

Last week Nick and I also started to talk seriously about what the virus might mean for our lifestyle and whether we were happy to wait to be told what to do or whether we should think ahead. We decided that we were getting more and more concerned about the risk that we were facing especially with the kids being at school and clubs every day.

Nick’s company had already contacted him at the beginning of the week to say he had been put on the ‘at risk’ list due to my myeloma and the treatment I’m on. This meant that he didn’t have to go to the same meetings, hospital visits etc that might normally have been part of his role, nor travel to London for unimportant meetings. So if he stayed off work, but we kept the kids at school, it felt like we were doing things in a very half arsed way!

By the following day things had moved on and most of his company was being told to work from home where possible and so we talked again and decided that we were going to email the school to tell them we’d be withdrawing them.

The kids haven’t loved the decision if I’m honest because they can’t see their friends but they have understood why we’ve done it. I’m not sure they particularly love our commitment to home schooling them – lol. We’ve been so lucky as the school has been amazing in their support in terms of a) agreeing they would support the decision and b) agreeing to get teachers to send work home each lesson. We’re ever so proud of how the kids are doing though – they’ve been following lesson plans each day and doing their homework. It’s not easy when you don’t get to see your friends at all at that age (or at my age!). I’m sort of hoping that schools close soon for their sake – they won’t feel so separate then. At least now most clubs have finished so they aren’t worried about missing out there.

At the same time as withdrawing them, Nick and I made the decision to self-isolate. Me totally and Nick as far as he can do whilst supporting us. We’re now 4 days in and I can promise you it isn’t easy so I can understand why the government wanted to wait to ask people to do it!! It’s amazing how many things you forget that you ‘pop out’ to do. Birthday cards, loaf of bread etc.

It’s also amazing how many things come into your home that have been touched. Most of us have probably seen the change in behaviour of amazon and Royal Mail but have you thought about wiping down packages when they come in. And what about your online food shop that so sensibly keeps you in isolation? Should every packet be wiped down? Or kept separate for 12 hours to and sure any viruses have died? Have I just become paranoid? All mad when you start thinking about it, but think about it we all should. This is really serious.

So yesterday most British people heard Boris Johnson and his team tell us that people like me, with myeloma, should isolate ourselves for 12 weeks. We got there first! But it’s going to be hard. Very hard. Especially once other groups get added to this, which I’m convinced they will be.

I can’t totally isolate as I have to go to hospital once a month for my treatment. But it sounds like that’ll be ask quick and careful as possible and I’ll be set back home to get results via the phone and not face to face. That suits me now that they aren’t planning to change much or move forward with the SCT. To be honest I think I’ll need that trip to stay anywhere near sane!!

I’m sure there’s more but my brain has gone for now so I’ll stop boring folk!

Meibomian Gland Dysfunction, Chalazions and other fun things!

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Back in January I wrote about the fact that I had been diagnosed with Meibomian Gland Dysfunction. Well, it turns out I have it pretty severely now, and we think that it is caused by the velcade that I am having, albeit it that it is pretty unusual to have it! I like to be unusual. (Not). Basically, it looks like my glands have not only blocked up and caused inflammation, but now they have become blocked and infected (blepharitis) which have lead to what is called chronic blepharitis and what is called a chalazion.

So when I just had the MGD without the infection, the best way I was told to treat it was by using a warm compress and massaging both eyelids. You can buy masks from the chemist that do a similar thing, and wipes that you then wipe the eyelid with. Anyway, that seemed to be working really well until a couple of weeks ago, when the first stye/ chalazion occurred. It basically made my left eye really sore, really swollen and very itchy. So I took a trip to the GP on the Friday who prescribed me with antibiotics….and I also started on ibuprofen on the recommendation of a friend. (Before anyone says anything, I don’t have any kidney damage so whilst I’m not meant to take it, it felt like a sensible thing to try in the short term)

Anyway, into the hospital on the Monday to be told it wasn’t anything to do with the velcade (hmmmm….I don’t think so!), that I should come off ibuprofen so I didn’t cause any kidney damage and take antihistamines instead, and prescribed extra eye drops. And things very slowly seemed to improve.

Until the same day two weeks later, when it came back in the right eye (and less so in the left eye again). This time, I immediately started back on the eye drops which I luckily had, emailed my consultant (who hadn’t been the one to give me the previous advice), and got it agreed to go back onto the ibuprofen to at least help bring the swelling down a bit. This time though, I’ve had it really sore over the whole weekend with it not only causing the chalazion, but also becoming infected.

So today, back to the hospital and it was agreed that I wouldn’t have my final dose of velcade as it quite probably was that which had caused the issue. In addition, further to an article I was given by my consultant, it was decided to put me back on antibiotics, but mainly to increase the dexamethasone that I’d had reduced last year due to it causing me anger issues! Dex is an anti-inflammatory and I have to say that I felt better within a couple of hours. It’s still infected of course, but the swelling is lower and I haven’t needed the ibuprofen.

Now we’ve got a bit of a waiting game. Hopefully, my eyes will just improve as I shouldn’t be having any further velcade. That is over thank god. In addition, I’m hoping to get a bit of energy back too… I’m now meant to be going to daratumabib maintenance until my stem transplant.

But, my numbers went up last week. Grrrr. Nothing is simple. I think they’ll still try at least one lot of maintenance to see if the dara works better without the velcade. But who knows what they’ll do if they keep rising….we could be back to the DT-Pace regime. I did my bloods again today, and I think they’ll be done next Monday too…all of which will give us a better indicator of whether I’m hovering around the same place, no longer responding to treatment, or whether my numbers do what we’re desperately hoping, and come down a little further to about 4 or 5.

Somehow (I may thank the antidepressants for this), I seem to be coping relatively well with it all. As does Nick I think. We aren’t telling the children too much until we know and luckily because we’re not falling to pieces, that is much easier. There is no point panicking unless it becomes necessary. So, I’d ask people just to take care in talking in front of them so that we can tell them what is necessary, when it is necessary, rather than them overhearing something….thank you.

I’ll update on here when we know more. Keep your fingers and toes crossed for those numbers to come down further please….I’ll even accept a few prayers if people are that way inclined!!

How communication makes all the difference

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So we have met with the transplant consultant this week and things are a little bit clearer. Not much has changed but we understand it all a little better now which is helpful.

So one thing that he explained to us was that my paraprotein isn’t as low as they would want. I thought that because they are the same as when I had my first transplant, that they wouldn’t have an issue. But it seems that they look at the percentage decrease, and I’ve only reached about 60% where they’d want to see a decrease of about 80%. So, what does that actually mean. Well it seems that we’re going to keep watching for a couple of months. I come off my velcade (thank god!) after next Monday, and they think there is a chance that the Daratumabib has the possibility of kicking in again. If it does, and it takes my paraprotein lower, it might reach a level with which they are happy to proceed to transplant without any further treatment. Which would be great news.

If however, it doesn’t take my numbers any lower, or they start to increase, we may have to revert to the idea of DT-Pace. Yuck. However, at least now, whilst we know that it would be an awful treatment, that it would be the best option available and would give me a much better chance with the transplant. We’re still keeping our fingers crossed that the numbers keep going down though!

He also discussed my stored stem cells which have been at the Royal Marsden until recently. I was told that there weren’t enough, but it now seems that we might have. Apparently I’m very unusual because one test said there were enough and another said that there weren’t. Not what usually happens. So there are some questions to be asked to see which number is the most useful. And in the meantime, I’m going to try and lose some of the weight I’ve put on from a mixture of Dexamethasone (the steroid) and my total lack of willpower! Apparently, the result that says I don’t have enough stem cells, is linked to how many they need against body weight…..so whilst they haven’t said anything about losing weight, I’m thinking it can’t hurt*.

So in terms of dates, we don’t know much more. I think it’ll be April before we have much of a solid idea, and at that point, we’ll probably get told either a timescale for transplant, or that I’m going onto DT-Pace….or knowing my luck, something totally different!!

However, I’m hoping that in the meantime, that coming off the velcade might mean that the next couple of months are a little easier and that I start to feel a bit more human again. I have to say that the last few weeks have become harder and harder. I’ve been so tired that over half of my week has been wiped out. I haven’t even managed to walk Marley and have had to get the kids onto it. Rebecca even dealt with the builders last week, made them coffee and put a blanket over me while I slept for 3 hours. Poor kid. But I’m so proud of how they are coping whilst looking after me.

Anyway, the overall feeling is that by getting the information that we did on Monday, Nick and I both feel in a position that whatever decision they make moving forwards, we have 100% trust with what decisions they’re making, and why they’re making them. And that has to be good. The one thing I never want is to wish we’d done things differently.

* I’ve decided to give up processed sugar, crisps, nuts and takeaways for Lent – take a look at my #50B450 tab on this page.

A reprieve

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So we’ve had some relatively positive news which is that my paraprotein has gone down ever so slightly which means my consultant is happy to keep me on the current treatment for the time being and not move me to DT Pace which I/ we were dreading!

It doesn’t mean he won’t change his mind, but it’s good news for now and we just have to just keep our fingers crossed that it doesn’t go up again quickly….and in fact that it goes down. The other impact is that my transplant will probably be a bit later than we’d expected….again it’ll all depend on what happens with the figures but it looks likely that it won’t be before the summer now rather than April/May.

That could be really good as it’s a nicer time to recuperate after my 3 weeks in hospital, will mean the kids can get to places in the light and also means we can keep getting work done on the house! We’re desperately trying to do as much as we can this year before the transplant so we can enjoy it after!! We just have to avoid when Rebecca does her Rangers community project in Romania as she doesn’t want to be worrying – sort of hoping we could go for a time just after she gets back in August!! But we’ll see!

Anyway, thought I’d just update the score as so many of you have been in touch and sent best wishes to us all – bear with us – it’s even more of a yo-yo for us than it is for you!!

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Thanks

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Thought I’d just write a quick post to thank everyone for contacting Nick and me to send us love and support after my last post.

We really do appreciate it all massively. We’re busy trying to bury our heads until we know the full story this week…and hoping that my numbers will do another spin around!! Well I am anyway!

So we’ve spent the weekend doing house renovations, playing games with the kids and generally having a nice time with family and friends. And trying not to think about myeloma at all! My plan is to keep as busy as I can until I find out more at the latter end of this week! And if that means exhausting myself doing work on the house, brilliant – at least then I’ll sleep through the next few days 😂

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Facing a New Future

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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.

Bleurgh – bored and fed up now!

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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!

2020 – A (Belated) New Year!

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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!

Worcester Rd – the new pharmacy!

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As I started this blog this morning I was taking a wide variety of drugs and cocktails!

  1. Daratumamab – immunotherapy drug
  2. Velcade – chemo drug
  3. Dexamethasone – evil drug – should not be allowed past go. Ruins relationship, friendships and more!
  4. Lanziprazole – protects stomach…I think
  5. Co-trimoxazole – godminly knows, I just take them and hope!
  6. Pregablin – reduces impact of neuropathy in feet, calves and hopefully is reducing pain in back.
  7. Colosevelam – deals with mile-bilemalabsortion – don’t look that condition up if you’re eating!
  8. conjugated oestrogen – for early menopause that kicked in at 35
  9. 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!

  • Remember
  • 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🎄