When sleep is like a Facebook timeline!

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!

The Reality of Myeloma – the incurable bloody cancer

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.

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Proud as Punch

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.

Head Up and Get on

It’s been just over two months since I started on phase 2 of my treatment journey….i.e treatment since I relapsed. I felt so bouyant when I started it, and really ready to just get on with it, have a few months of treatment and go on to my transplant. Of course I knew what to expect so surely it was going to be a relatively easy walk in the park …. the house and the family would be fine, and work wouldn’t get in the way until I got to the time I went into hospital for my transplant.

Nope…..

I’m struggling. Really struggling emotionally. And actually finding it quite hard to admit it to most people. I’m trying really hard to keep life normal and I know that’s good and mentally in some ways, will keep me stronger than if I allow myself to totally collapse. But it doesn’t take much when I take some downtime, for me to have the time to totally break down in tears and struggle to get my head around this current treatment regime and how it is making me feel, behave and act. I think that’s why I’m keeping so busy because I don’t want to be a wreck whenever I’m not! Poor Nick and the kids don’t know when I’m going to be strong and when I’m struggling and they have been amazing at trying to keep up

Anyway, Nick and I had a small breakthrough this week where I acknowledged for the first time that the side effects from the drugs, largely the exhaustion, but other smaller ones too, were impacting on my ability to cope. I have so many ‘big rocks’ in my life (as Nick likes to call them!), that I’m struggling to manage them all. The family, friends, my father (now with worsening dementia & moved to a home), work, the house, the garden, netball. All of them that have been majorly important to me, and that I haven’t wanted to compromise on any of them.

For the first time, I admitted that something had to be put to one side, and after a long discussion, I have agreed that the something that I’m going to cut right back on is my businesses. It’s been a really hard choice but I’m finding it harder to do it well, and I don’t want to let clients down, In addition, being social media, it is something that stays in mind almost 24-7, and I often find myself working when I should be resting – not good for anyone! I’ve worked so hard to build it up and frustratingly, I was so close to feeling like I was getting where I wanted to be, but I’ve made the decision now to take away the social media management aspect of the business and just focus on LinkedIn training as and when it comes up. At least then I can fit it around when I feel capable of doing it, and it only takes up a couple of sessions of headspace! I don’t quite feel better for having made the decision, but I think I will once I stop at the end of the month. Hopefully it’ll only be temporary until I’m back on my feet next summer, but we’ll just have to see. And hopefully I won’t regret it.

The other thing I’ve found really hard, and I’m only just starting to admit this to Nick, is my relationships with other people. It’s been strange to see the change in how people handle what’s been happening this time round. I’ve got some amazing friends. Some new ones up here in the Midlands, who are always checking in on me even with their own issues. And some amazing friends from my school days who I know are there at every corner too and, despite us now living what feels like a million miles away, I know that they are always there if I could only pick up the phone more often and tell them I need them! And a number of other great friends who really care and keep in touch.

But despite all of this, and despite having the best family in the world, who support me every day with love, cuddles and understanding, I feel very alone sometimes. Maybe my fundraising hasn’t helped as people are so bored of the whole story, that they have switched off what is going on now. Or maybe people I thought cared, just didn’t. Or wrong place, wrong time. I think it’s quite a common thing to happen with cancer (finding that friends drop off) but I didn’t experience it first time round. Or maybe I just didn’t acknowledge it that time, because the people who ignored my diagnosis weren’t that important to me. This time, they have been and whilst I try to understand it, it can hurt sometimes.

I’m very aware that when we made the choice to move to the Midlands, we made this aspect of our life more difficult. We knew that we were taking ourselves away from a support network that was easy, and we did it in the brave and optimistic hope that I would stay in remission. But with the knowledge that I may not. So, this isn’t meant to be about me guilting anyone particularly although I understand that there’ll be people out there that will think I am, or will say what I’m saying is unfair and puts pressure on. But as I’ve always reminded people….this blog is for me first and foremost and I needed to get this off my chest in the way that works for ME. Let me be 100% clear….I don’t want support from people who don’t care because that’s not genuine and I’m not up for fake friends/ relationships. It’s just hard if you realise that perhaps some people you thought would care, haven’t found the time to even ask the question if you are ok.

Anyway, it is what it is and I have decided again that I also need to get some counselling to try and help me make sure I’m handling things better and addressing the bits that are more difficult. It’ll take some time for that to happen though but hopefully the feeling that I’m taking things in hand will help me a bit.

Happy endings to come?

So I’m starting this post on Monday 16th September – but not posting it quite yet as I’m hoping that it’ll have a happy ending!

It was my weekly daratumumab injection today – week 8 of the 10 weekly ones and then I’m meant to be going to 3 weekly for that and weekly for velcade and dexamethasone. I’m a bit fed up of it being weekly but was quite chilled on the basis I’m due to see my consultant on Thursday and was hoping to be told we could book a holiday abroad and that my Dex dose might be able to be brought down so I am less vile to everyone (myself included!)

Slightly frustratingly, although not totally out of the blue, there’s been a slight hiccup. They have changed where my bloods are measured and they will now be measured at Heartlands in Birmingham, and not the QE like they have been till now. That would be fine apart from there are often discrepancies between sites which, when you’re trying to assess whether a drug is doing its job, and how well it is doing its job, make it tricky.

I had been told they’d try to measure at both hospitals the first time, given their knowledge of the possible blips, but unfortunately it didn’t happen and I was faced with the news today that my paraprotein had gone up from 12.2 to 16. Quite a big jump for me! And whilst I knew that it may not be a ‘real’ increase, it still made Nick and I quite nervous. Luckily my consultant is superb and is already on it, trying to get repeat bloods done, ASAP, at both hospitals so we can see where I genuinely am. He has had other results do the same thing so is very optimistic that it’s all (or mainly) about the change in testing site.

So, in the meantime, and as hard as it is when it’s playing with my mind, we’ve decided not to share the news with anyone so we don’t worry family and friends. Hopefully within a week (and when you actually read this!) we’ll know what the actual situation is.

It’s amazing how hard it is to not worry ourselves though. Nick is better than me but I’m already worrying we won’t be able to go away or more importantly that he might not let me lower my dose of Dex until we know what we’re playing with. More so, I’ve been worrying that this last two months of treatment has been pointless and that I might have to start a new and more intensive drug regime…what will that mean? Does that mean my relapse this time is more aggressive? Will I be much more ill on a different treatment? Is it just that I don’t respond that well to dara? So many questions coursing through me! And probably all pointless if it is just a blip. But I can’t stop….and not helped as I lie here at 2am on a Dex night 😱. But I’ll stop here and add to my update on Thursday once I’ve see the consultant and know more.

Monday 30th September: So it seems to be good news which is great! After two weeks of waiting, we’ve finally got the results in from Heartlands which suggest that whilst the numbers are higher, they are still going down. We’re still waiting for the QE results which will show us a bit better how well I’m doing, but the main thing is that my numbers AREN’T going up, and that the drugs are seemingly doing the right job still. Again….worrying for nothing!

My consultant was very confident last Thursday when I saw him, that the changes would be due to the change of equipment at the new centre. I just couldn’t bring myself to believe it, and was super worried that the drugs had stopped working and that the past month of horribleness had been for nothing. I couldn’t believe his confidence or Nick’s. I think the idea that it might not have worked was just a bit too much to get my head around. That and my feeling that if I can just get through treatment successfully for the next 12 months, I’ll be in a great place to benefit from the next generation of myeloma drugs which are likely to come through over the next two years. I was so scared about needing alternative treatment already.

I was certainly on edge for those weeks, not helped by the decision not to tell most people what was going on. Living with it almost on your own is quite hard, but it did feel like the right thing to do…born out by the fact that there wasn’t a reason to worry! However, what I’m discovering, is that the fallout the day or two after I’ve gone through one of these ‘waiting games’, is quite obvious. It’s like it takes all my energy to stay positive, and then, even when I get good news, I collapse a little for a day or so once the results are in. Mad really. At a time I should be celebrating, it’s like a train hits me and I get all tetchy!

Anyway, I’m hoping that this week should be a good one without that to worry about now 🙂 What is also good is that last week, they reduced my dex too and almost straightaway, I could tell a difference! Not only did I sleep for a great total of 6 hours on the first night (rather than the usual 2 hours), I also didn’t get close to killing the children, or Nick. I felt so much more in control of myself again and so much more able to deal with the daily things that life throws at all of us. Here’s hoping this week is the same!

Still waiting to book a holiday but hoping to look at it this week – fingers crossed the Thomas Cook collapse doesn’t make it all too expensive, but we’ve got ideas for what we can do if that is the case.

Dexamethasone – The Devil Drug

My last post started to discuss the fact that life is pretty rough at the moment for me. It’ s been very different to when I went through treatment 9 years ago when other than periods of exhaustion, I didn’t seem to have any side effects from the early drugs. This time the devil drug, Dexamethasone (DEX) seems to have really hit me hard.

So what is dex? Well I’m no expert, but basically, it is a steroid that is meant to help to prevent the release of substances that might cause inflammation in the body. It also suppresses the immune system and can help with chemo-induced fatigue. The idea for me, is that it really supports the work of velcade, the chemo drug, and is thought to speed up the impact that it has, i.e bring my myeloma into check quicker, and my paraproteins down.

So that’s the good stuff that it helps with in cancer treatment. Unfortunately it also has a huge number of negatives attached with it, both physically and emotionally, that can cause a huge impact in patients….as I’m finding to my detriment. It can cause the following, just to name a few:

  • Mania – this can be a good sign in that you can end up with increased energy and due to not being able to sleep, can get lots done. The downside is that you often lose sight of reality when you’re going through this period, meaning you might make inappropriate decisions, say the wrong things, or even suffer delusions or take actions that you wouldn’t normally (apparently shop lifting is common – not me thank god!)
  • Depression – it speaks for itself, but even the days when you’re not on dex can be an issue as you’ve no longer got that mania, have spent hours (if not days) awake and then get the come down. Not pleasant for the patient or those surrounding them!
  • Impulses – lots of people talk about going on spending sprees when they’re on dex! I’ve managed to keep it in check thank god, but there have definitely been times where I’ve thought perhaps I can’t wait for that Breville toasted sandwich maker (after all who doesn’t need removable plates for the dishwasher – Cath I blame you!), or that after 20 years of making decisions with Nick about artwork, I can choose something without him!
  • Weight Gain – I swore this wasn’t going to affect me this time. WRONG!!!! OMG. Somehow I need to get back on track with it as it makes me miserable that I’ve put on soooo much weight in such a short time. Partially, it’s just increased water retention, but partly it is that no matter how much I say that bag of crisps is a bad idea, I still eat it…and then eat another pack! And top it off with a few other bits from the cupboard.
  • And then the general side effects: Aggression, agitation, anxiety, blurred vision,
    dizziness, fast, slow, pounding, or irregular heartbeat or pulse, headache, nervousness, numbness or tingling in the arms or legs, pounding in the ears, shortness of breath, swelling of the fingers, hands, feet, or lower legs, trouble thinking, speaking, or walking, troubled breathing at rest

I’m on a couple of Facebook pages where patients and carers can discuss and share information and Dex really is known as the most awful drug around. Even the consultants know it is the devil drug. Everyone who has seen it in action, knows how it can almost destroy some relationships. It is rare patients aren’t impacted (like me first time round). It is rare that families don’t see a different person in their loved ones. It’s rare that spare rooms don’t come into their own!!! It really is awful – no exaggeration if you’re thinking I’m over egging this!

Those of you that have been following my blog will know that I found my first week horrendously hard. It seemed to ease a bit after that and whilst I definitely had my ‘Jekyll and Hyde’ moments, they were pretty short and not too horrendous. But I’m definitely feeling that it is building now. I’m not sure whether it is that I have a ridiculous amount of stuff going on in my life at the moment (….I don’t really have time to have flipping cancer, let along a bad temper!). Or whether the drugs are solely to blame. Or whether I’m just turning into a miserable old cow in mid-life. But it’s not a particularly pleasant time and I seem to spend about 2/3 of my life not in a massively smiley place. I hear myself talk to friends and for once, can’t really put the positive spin on things while I’m on this drug. And I don’t like that much.

Living with being miserable is really horrid. I feel like a terrible wife and mother, despite Nick and the kids being amazing about it all – they couldn’t have been more supportive of me. I never take Nick for granted with this – he really is outstanding and no-one around us will ever know how amazing he is in holding the whole family together. But the way that the kids are coping really shows what amazing young people they are growing into. They support me, they love me, they cuddle me, and most importantly, they forgive me when I am just the most awful mother to them. And in return, all I can do is apologise and keep trying to keep myself in control.

I write all this though, with other thoughts in my mind. This is not an excuse for me. I don’t want to allow myself to behave badly because i have the drugs as an get out clause. I will fight really hard to be reasonable and thoughtful to the people around me. But in the same vein, if people who don’t know what is truly going on, start saying the only reason I get cross, or grumpy is because of the drugs and that my opinions aren’t valid, or true, or allowed, that will drive me round the bend. The drugs don’t impact me 100% of the time, and especially with longer term values and morale issues, my views are still valid!

I hadn’t realised that when I go to daratumumab three weekly, I still had to keep having the velcade and the dex every week! Gutted doesn’t begin to explain how that made me feel when I’d been counting down the days to a more normal existence. So, I’ve decided that I am going to speak to my consultant when I go in next week. I’m going to see if we can reduce the dexamethasone slightly if my numbers are still looking positive. Just a bit. Just to ease the impact and hopefully allow us a slightly more pleasant run into the time of my transplant. My paraproteins are currently down at 12 so I’m hoping they might have dropped under 10 by next week and he’ll be happy about doing that.

OK, so I’ve finally finished this post because it’s a Dex day…..I started it 5 days ago! So the two manic days or in process now…might sleep a couple of hours tonight, might not. But at least I’ve finished this and can move on to a bit of my work….massively behind at the moment while I’ve tried to fit in other stuff like house, family and friends. But Monday’s at least are my catch up night…there’s a positive to end on!

Crappity crap crap!

Well that’s probably enough to put most people off reading any further but I’m really struggling today and have been for a couple of days. I can’t really say why but the last 36 hours has seen me move from a place where I seemed to be happy and fairly good, to a place where I am just so sad, so angry and so upset with life.

I can’t really say why it’s happened or what has happened, but after a fab night away camping with some of the school mums, where I got the best nights sleep in weeks, and surprisingly didn’t mind not drinking, I got home the following day, on Sam’s birthday and life seemed to start going to pot. By the evening, I was struggling to take anything the right way, and just felt like life was totally rubbish.

Today, I was out for a girlie day with my lovely 14 year old. Well that was the plan. But it started with me waking up still in a mood that I couldn’t explain. Sad, frustrated and ready to be cross with anyone. Then the water seemed to turn off upstairs. For no reason. Just as we were due to leave.

We managed to have a reasonable day, and thank god we’d invited my MIL. She helped me to manage my frustrations, and somehow was very lovely about the fact that I was so moody and grumpy.

But we got home, and it all went wrong again. And that totally tipped me over the edge. As friends will know, we started doing our bedroom in July before my treatment started and the idea was that it would be finished within a week of treatment, i.e by the middle of August at the very latest. It was always a risk but we felt we could handle it. Things didn’t go quite according to plan and finally this week, I felt like we were nearly there. If only the builder felt the same way! I’m so cross with myself as I allowed him, on the basis that I thought he was looking out for my best interests (fool that I am!) to talk me into paying him before the job was complete. Now, things aren’t quite right, and he seems to be talking to me like I’m asking him to do unfair things…..even though it is just him finishing the job. Never again will I trust anyone.

But it was the last thing I needed tonight when he talked to me on text like I was the unreasonable one. I’ve spent the whole night sobbing on Nick. I’m so upset as I thought they were our friends but things have been left unfinished and whilst they’re coming back next week, they’re talking like they’re still doing us a favour. But it was all quoted for as part of the job. I’d never normally have paid in advance, but he played the guilt card and I didn’t want them to think I didn’t trust them….that word was even thrown at me. And now I wish I hadn’t. We don’t have the money to spare to pay it again, or to be diddled. And I don’t have the energy to deal with it all to be honest. I’m just exhausted and feel totally let down.

So poor Nick has had to deal with me, not only in a chemo induced meltdown, but also feeling very let down and very guilty that I have put us financially in a position. We thought that we’d be back in our bedroom by Monday, but who knows now.

And not only has Nick had to deal with it all, but the kids are really sad and trying to look after me as I’m not sure they’ve ever seen me so sad and upset. I really value friendships and relationships with people so when that breaks down, I feel so sad. But it also makes me angry that someone can do that to me. That they can leave us in this position. I wanted to scream (in the middle of sobbing!). I wanted to tell everyone including the builder how cross I was.

Luckily, Nick, as usual has been my rock. I don’t know quite how he has pulled me through to where I am now, but he has and he has stopped me from saying things I’ll totally regret. He has also pulled the four of us together and helped the kids to understand where I am. They have helped to stop me crying, even if I can’t quite smile yet. We’ll just have to see where we go with the builder. There are a few directions I suppose. But the family has to be more important.

I just hate it all at the moment. I hate the drugs. I hate the moods. I hate the feeling of not knowing what I’ll feel or when I’ll feel it. I hate the fact it feels so much worse that 10 years ago. Luckily I love my family and my close friends who help me to know that life is bigger than bloody myeloma ….. and house renovations.

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Life outside of Treatment

I’ve been a bit quiet on here the last week, largely for two reasons. We’ve been dealing with my dad after his fall last month, and also, there’s been little change or reason to write much about my treatment.

The last week has been a bit of an eye opener into the gap in care for the elderly. For those that don’t know, my dad has alzheimers (still not really sure at what level) as well as having had his fall and therefore, after a lot of thought and consideration, it was decided that he needed full time care of some sort. This is all despite the fact he’s done so well since he fell, breaking his thigh. His care in Oxford has been pretty amazing in the main. They (with our support I’d like to think!), have managed to get him to a place I didn’t think we’d reach when I saw him a month ago. I honestly thought I’d lost my dad.

But now, he is walking (albeit with sticks and a frame), can occasionally have coherent conversations, and is smiling with the twinkle in his eye that I remember as ‘my dad’.

However, it seems that there is a big gap for those people who are physically recovering, but perhaps require a bit more support to ensure that they aren’t a danger to themselves when they leave the hospital. We’ve had to start thinking about his move out of the hospital this week and were quite staggered to see that they might send him out with only one physio session a week, when he was on 7 sessions. For a man that was improving daily, it felt odd not to at least stagger the physio to try to reduce the chances of him having a serious fall once he was out.

Anyway, we’ve realised that sadly we can’t change that outcome, and luckily, as a family, we’re able to ensure that he can continue to have physio even if we have to arrange it. I just feel for those that can’t, or worse still, don’t realise that they should be. There’s definitely a big gap where those that are mentally sound, seem to slip slightly through the gap. It’s been an exhausting week, trying to work out where dad is best to go now, and how to deal with this gap in care, but hopefully we are nearly there and we can settle dad down.

I have to say that whilst it’s all been going on, I probably haven’t really been looking after myself very well, and as a consequence, I haven’t had a brilliant week with headaches and exhaustion. Treatment has all gone fine in general and my consultant is really pleased with my progress to date. We saw him on Thursday and he basically was all smiles. He did try and ready me for the fact that I may see a plateau at some point and I wonder if this was because my numbers went down less the last time than the first time. But I won’t think too much about that!

Paraprotein Results:

  • At start – 21.6
  • After 1 week: 16.6
  • After 2 weeks: 14.2

I’ve now had 4 sets of treatment, so there’s a chance that my numbers are even lower without us knowing, so that’s good. It looks like I’ve got another 6 weeks of having my infusions weekly, and then I will be able to drop them to every 3 weeks. That’ll be lovely as at the moment I only have one or two days a week where I’m not exhausted or feeling weird and wonderful…hopefully once it goes to tri-weekly, I’ll get the odd week of being able to enjoy life a bit more. At the moment I can’t even enjoy a glass of wine (which for those of you who know me, will know is a BIG deal!)

At the moment I’m not ill as such so I really shouldn’t complain. I have been having headaches for the past few days, but I think that’s been due to my dad too, so I’m hoping that these will reduce this week. I’m definitely getting the start of my neuropathy back too. This often comes from the velcade that I have as an injection and I’m getting the spongy feeling face, hands and toes – it’s hard to explain in words but so long as it doesn’t turn into the more painful form of neuropathy, I really won’t be moaning. And I’m exhausted.

The main reason is the Dex which I’ve talked about before. My consultant is happy to change it but actually, after the first week, I’ve managed it much much better. I don’t sleep on the first two nights, and the third night isn’t great, but all in all, I’ve now got my moods in check for a lot of it. The kids know I might be a bit more snappy or sad than usual, but in general, I’m trying very hard. I don’t want to change the dose unless it becomes manageable, just in case it impacts on how much the other drugs work!!

But the great news is my consultant is onside, at the moment, for us to consider going on holiday in the October half-term. It looks like it might even fall in-between one of my 3 week appointments which would be amazing. He won’t commit until our next monthly appointment at the end of September, but if things are good then, and I’m still handling the treatment well, we might be able to start looking for somewhere hot for October which would be amazing!

I’d also like to just say thank you at this point for all the lovely support and care we’ve had from family and friends over this first month. It’s hard to explain how starting on chemotherapy, and not knowing whether it will work or not, impacts you emotionally. It’s been a really hard time for Nick, me and the kids no matter how much of a grin I try to put on my face! But we’ve had so many lovely messages of support, cards, flowers and gifts, all of which help us to keep smiling along this long journey ahead of us. So thank you….you all know who you are! x

DVD – Day 15 of treatment – All starting Well!!

Well normally the first thing I do when I get into hospital is to write this blog and give an update. Today, I’ve been really tired so have only just got round to doing it….but the good news is that because of that, I’ve had a blood result in the meantime….my paraprotein levels have dropped from 21 to 16.6 (as of the 5th August). I can’t begin to tell you how relieved that makes me feel that the drugs are actually doing something!!

So, basically, the paraprotein is an indicator of what the myeloma is doing in my blood…the higher it is, the more likely it is that my myeloma is active and more prolific in my blood. So this result is a great start, especially since my bloods were taken just a week after the first dose of daratumumab…and before I’d had the second dose. God, if it keeps going down at this rate (don’t worry, I know that might not happen!), I could be down to zero by the end of September! Slightly scary, as I don’t know whether that might also mean an earlier transplant where I’d been hoping for spring next year! But I won’t complain if it means we’re kicking this bloody myeloma into touch.

Funnily, the kids asked about the transplant when I was out for a walk with them the other day. I don’t know what made me mention that it could be over the Christmas period. Maybe it was just meant to be. They were a bit sad, but we talked about how we’d make it work no matter what happened and I think they were good about it all.

They have been amazing so far. They’re giving me space when I need it but trying (as hard as 12 and 14 year olds can!) to support Nick and I. What’s been great is that the treatment hasn’t hit me as badly as I first thought it might. Even the dex rage didn’t seem to come last week which I am so relieved about. I’d even talked to my consultant via email about reducing it if it had carried on but now I won’t need to. Although interestingly, he pointed out that there is limited research on the impact of Dexamethasone, despite the awful side effects. They’re so busy researching the main drugs, they just hope that the dex supports them!

So, I’m sitting here having my drugs infused into me and feeling quite chuffed with myself if I’m honest. I’d said to Nick only this weekend, my concern about just suffering a bit of tiredness, was that perhaps the drugs weren’t doing much. I know it’s early and perhaps we need to know next weeks results, but this is a great step and I’ll take good news where I can get it.

I’m even very lightly throwing around the idea of trying netball tomorrow depending on how tired I am….I’m really missing it and my back doesn’t seem to be giving me any pain at the moment. It’ll only be practice and maybe I’ll only do 20 mins…but how cool would that be!!!

DVD – Day 8

So I’m back into hospital today for the next tranche of Darathumabub, Dex and Velcade. It should be a much quicker experience this week and whilst last week was two days of 9 hours, this week sounds like it’ll just be one day and that whilst there’s the usual hours of hospital ‘waiting around’, the actual infusion should only take around 3 hours. I’m assuming that won’t lead to extra symptoms, but will know later I suppose!

In terms of the ‘Dex effect’, last week calmed down a little after my last post. I was still a bit more emotional than normal, but felt so much more like my normal self which was such a relief. I managed to do some gardening on Saturday (with everyone checking in every 30 minutes asking if I was overdoing it!), and went to visit my dad on Sunday which I was so relieved to do.

It’s been hard knowing that he’s in hospital at a time that I can’t be there to support him. He’s had the operation on his leg and that went really well, but he is very confused, can’t really put a sentence together any more, and most worryingly for me, doesn’t seem to have any drive to get up and walking. They think he could walk again if we can get him past the mental barrier / pain that he currently has stopping him. Interestingly, they think that his dementia may be influencing the pain and that whilst healthy patients would fight through the pain, when you have dementia, apparently it can stop you from being able to do this so well. The next week will probably be a big one in terms of how things progress or otherwise.

So I’m trying to get myself ready for the week to come. I think I might take myself off social media from tomorrow night for a couple of days while I deal with the potential dex side effects but I need to find a way to make sure I’m good for the weekend. Rebecca is doing her 3 Peaks to raise money for her to go to Romania.

I’m so proud of her as she hates walking so it really is a big thing for her. She’s got to raise over £1800 so hopefully this will help her a lot. But it means I really want to be there to support her. I have admitted to myself that walking 26 miles up and down mountains, probably isn’t the most sensible thing I could be doing but I do want to be able to support by taking them, collecting them and maybe doing some of the easier walking bits alongside them. So, keep your fingers and toes crossed that the end of this week is as good as the end of last week so that I can do all of that…..oh and I need to visit my dad on Friday too so that I fit that in!

Right, I’d better go and do some work now while I’m waiting for the dara to arrive….