Time for an update

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.

UPDATE:

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.

Merry Christmas 2019!

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

With all our love

Nick, Deb, Rebecca, Sam & Marley xx

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….

…Go – DVD therapy begins! Week one

So after months of talking about this I’m off. I started my chemotherapy yesterday and am on Darathumabib, Velcade and Dexamethasone as my main treatment with a bit of zometa and a nice little selection pack of other drugs from the sweetie shop!

Still working!

Darathumabib infusion

Just a few of the additional drugs!

But the good news is that I haven’t suffered from any of the side effects I’d been warned of. I’ve got the dry mouth from the dex that I got last time round, but none of those from the cytokine release syndrome. That’s great news as it means that

1. I feel good (!) and can even do a bit of work when the WiFi works

2. I won’t need someone with me in the hospital when I come back every week

3. Hopefully the kids will get to enjoy some of the summer!

Now it’s still early days and there is a strong chance that symptoms may build up as chemo in my body builds up its residue (does that even make sense?). I’m also being given zometa again and that has always given me a fluey feeling a few days later – it’s also the drug we were convinced made me more susceptible to broken bones but maybe since I’ve had to give up sport for now it won’t be a killer.

So now it’s about keeping well. If you’re local and visit, Nick and I would like to remind everyone that I need to avoid anyone with any form of illness however minor it might seem to you. I’d much rather you asked me and we had to cancel plans, than you waited till we’d said hello, had a hug and then you tell me and I come down with something. The reality, as harsh as it sounds, is that any illness you have, I could have exacerbated, lasting longer and even hospitalising me.

I’ve got my first complication already as my dad had a nasty fall last week and has been admitted for a broken thigh bone. I got to see him on Sunday when he first went in but he was high as a kite and asleep on morphine. I really want to go back after his op tomorrow but will have to see how I am and will have to wear a mask. It’s the only exception to the rule that I will make – so relieved that he has got through the implications of the fall and just wishing him tonnes of love for the operation which is pretty major for an 87 year old. I just need to see him again now.

£50KB450 – My new fundraising challenge!

So I created a new page last week about my brand new fundraising challenge, and thought I’d just talk about it a bit on here as I’m really excited about it.

Any of you who know me in person, know that I can’t really sit back and mope about my relapse, but that to stop me from doing that, I need something really positive to keep me busy and focused elsewhere.

So, about a month ago, I decided that I would set up a challenge for myself, to raise £50,000 before my 50th birthday in 2025. Now, I know that seems a long time off, but I am very realistic that I have a long and challenging 18 months ahead of me….not to mention that Nick will absolutely kill me if I try and do anything major during that period.

So, I decided that not only would I give myself a long lead into this fundraising, but that I would try to make it focus on calling in other people to help me reach my target given how big it is. The idea being that if I could persuade friends, family and others to take part by doing their own fundraising, that we would raise awareness across the world, let alone in the UK. And hopefully the £50,000 too! I’m already doing pretty well asking 50 businesses to donate £50 – so if you know anyone who might want to do that, put them in touch!

Thanks to http://www.happy-giraffe.com for creating images – please note this is copyrighted

So take a look here at my £50KB450 page to find out more.

And if that inspires you, why not think about whether you can do an event or activity that raises money for Myeloma UK, and then either donate via my £50KB450 fundraising page, or set up your own just giving page, join my £50KB450 team, and it all contributes to my target 🙂

If you’re on Facebook, please feel free to pop over and like my page too! http://www.facebook.com/50kB450

If you’d like to help but aren’t sure how, I’m always happy to have a chat….just bear with me as I start my treatment as I may not come back to you straightaway!

Soon to start

Ok so after my last post, I have had my results back and my paraprotein has gone up again. Not fast enough to worry massively but enough that my consultant wants me to start treatment in July.

So we’re back in next week to talk it all through and set dates etc and then it looks like I’ll be starting on the 29th July. Luckily he’s prepared to be flexible as we’re meant to be doing some work on the house. I won’t be able to get it finished and will still have to decorate on treatment, but hopefully all the dirty messy work will be finished before I start.

Not sure I’ve quite got my priorities right…someone said to me the other day, “are you delaying to have some quality time with the kids?”……oops! Well hopefully we can do both.

I have to say that whilst I can’t bear the thought of being ill again, and going through all the awfulness that we suffered in 2010/11, I am pleased that it is a definite now…and that we can plan now. I’m a bit of a control freak with things like that. I need to know when I can work, when I’ll need help with the kids, when I’ll need dog walkers! I hate asking for help but I’m better when it’s all planned.

So the plan now is to keep things simple. We won’t be booking in to see people until we know how the treatment affects me. And if we have booked things, please bear with us if we have to cancel. Sometimes it can be emotionally difficult as well as physically difficult. And if that’s the case, we need to be able to do that…and for me, I need to know it won’t be held against me.

It’s going to be a tough year or so ahead of us. 6 months of treatment (twice a week at hospital), 3 weeks in hospital and then 6 months of recuperation. But we’ve done it once and we’ll do it again. And hopefully it’ll be as successful as it was last time.

We’ve told the children. They’re being amazing at the moment. I hope so much that will continue. People who have followed my blog will know we have always sworn not to lie to them. That makes it really hard at times. I don’t always know whether it’s right. Rebecca asked if I could die from my treatment. How do you tell a 14 year old that there is always a slim chance, without scaring the living daylights out of her. But I couldn’t say it wouldn’t happen as even we don’t know that. You hear of the ‘worst case’ scenarios and I’d hate them to ever think that we didn’t give them the opportunity to talk about the reality. So I talked more in terms of any treatment having tiny chances of dying but that mine had been really successful last time. She seemed to take that fine. I hope!

I’m sharing this one post on Facebook (and excluding her from seeing it) so that people know that my treatment is starting again. If you want to follow my new journey without wanting to ask questions your best bet is to sign up and follow this blog. Otherwise, feel free to call, text or email – I’m always open to a chat!

Waiting

Argh sat here on my sofa just waiting for my results. Good for nothing at all. I don’t even know if I’ll get them today as I even forgot my hospital appointment last week.

I mean….since when do you forget to go to an appointment that you can’t get out of your head!!! It was all I’d been thinking about for the week before and yet I forgot to go! Even when my consultant emailed me at the lunchtime about something else, did it make me go….ahhh, must remember my appointment….nope! I had genuinely got so stressed I thought it was a different day.

It’s not even like I’m waiting for something new. It’s still my paraprotein results I’m after. I’m still down to start treatment mid July.

Stupid really. On lots of levels.

That said, I am slightly more anxious at the moment as I have a bad back. I jarred it playing netball but 5 weeks later it’s still bad. It might be my own fault – I haven’t stopped playing netball as it keeps me sane….but each time I play it gets worse. But I don’t want to let the team down – we’re winning our league at the moment and are unbeaten. And I don’t know how long I’ll be able to keep playing for.

I’m hoping it’s just an injury. But with myeloma, we all worry it might be bone injury. My consultant doesn’t seem that worried at the moment. My bloods might impact that. If they’re good he probably will remain unworried.

I just want them to come through!! I did get a letter about my next appointment – strangely for 8 weeks rather than the usual 4. Perhaps that’s a sign all is well? Or just a mistake!

Still no email as I finish this and he’ll be starting clinic shortly. Perhaps I’ll do some DIY to take my mind off things.

When your week doesn’t get any better!

Well this isn’t so much a myeloma based post as a ‘What a week!’ post. I thought I’d try and get it down as I think it’s another example of how we’ve got stronger as a family and so able to cope with most things.

So we’ve just finished possibly the worst Easter break we’ve had! It all started off with a visit to my father who is struggling with dementia. And as anyone out there will know who has family members in the same position, it isn’t an easy scenario. One minute he is happy about the decisions that we make with him, and the next he thinks we’re interfering and trying to make his life harder. I’ve been on the ‘Dementia Friends’ course which I found really useful, so I now know how I should be responding….but actually managing to be the grown up in it all is posing more of a difficulty for me, and I’m finding myself arguing with him more than ever.

I think it is partially because that was how I grew up with him….lots of arguments and truth telling between us, and partially because of everything else that is going on in our life which means I’m pretty tired, grumpy and a little anxious at the moment!

Anyway, after some tears, shouting and frustration, with the kids and Marley (our dog) giving me lots of love and support, we sorted things out a bit. But just before I left, I had realised that dad had been sick the week before but not told anyone and it needed clearing. Not a problem. On went the gloves and it was sorted and the children and I left. I had a visit to make before we were due to go and visit old friends in High Wycombe where we used to live.

So, off we went to Wantage, down the road from my dad. I went for my appointment and left the kids in the car looking after the dog. Surprise, surprise, as all kids seem to have the knack of doing even at 14, suddenly they were both in the building for a toilet break. Ok. Well it would have been if on their way out, Rebecca hadn’t decided to try hurdling a tall iron railing fence, getting her foot caught in it and not being able to get it out! 20 minutes later, the fire engine arrived when we couldn’t remove it, she ended up high on gas and air and we had to get her to hospital! No visit to Wycombe. Luckily Nick had just flown in from Dublin as I had to drive Bex home from Oxford as the hospital wouldn’t see her for 3 hours and I couldn’t leave Sam in the car with the dog for that length of time. So West Midlands it was and Nick met us to take Sam and the dog home.

So after having arrived home just before midnight on the Tuesday, with her in a boot with a supposed broken ankle (now turns out to just be a nasty sprain), we spent the day recovering – Nick had gone to London for work. But around 5pm Sam started telling me he felt ill.

Around this time, I also got an email from my consultant saying that my figures had gone up again and that it was definitely time to admit I was out of remission and to discuss starting treatment. So a bottle of wine got opened and a couple of glasses drunk.

Bad mother who had been accusing Sam of eating too much chocolate then realised how bad she was when he projectile vomited down the toilet! Oh god. And then on the carpet! And within 20 minutes of this, I was also feeling bad – not long after I was joining him with the vomiting and we proceeded to take it in turns all night long. It turns out sickness can be quite a bonding experience (!) By the middle of the night, I was texting Nick saying he needed to get the first train back to us as I couldn’t cope (I’m not sure he’s heard me admit that before). And a good job too, as by 9am, Rebecca was also throwing up!

If you’re still with me at this stage, you’ll be pleased to hear this is pretty much where it all ends. I don’t think you could have written this. It was all so gutting as we’d planned visitors for the Thursday, Good Friday celebrations with Nicks family, and it was my Brother in Law’s 60th on the Saturday, all of which we had to miss as we were too poorly to get there. Luckily we made it down for my niece’s 21st on the Sunday although the kids still weren’t on great form!

So much for making ‘good’ memories – although there’s no doubting that we’ve definitely made memories this Easter!

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