Getting ready…

Today I’m back at the QE for lung and heart tests. They always do these before a transplant to check you’re healthy enough – keeping my fingers crossed there’s nothing to worry about! Sure there won’t be.

I’m feeling pretty healthy at the moment, if a little bit fat! I’ve signed up to the London to Paris virtual bike ride for Myeloma UK – you get a month to ride the 508km to Paris! I’m feeling slightly proud of myself as I started it 2 days after my stem cell harvest, and after 5 days have done 60% of it! I’d really like to finish the last 170km today and tomorrow!!

I’m not actually trying to fundraise on this one as I’d really like to do the real thing in May next year and I’ll need to ask everyone then so that I can raise the £1,500 sponsorship target. That’s on top of the £1000 I’ll pay out of my own pocket to take part! But if anyone does feel the desire to donate, they can do so here.

I’m also hoping to find a bike company who might donate/ help with the cost of a bike/ equipment so if anyone can help please let me know! I’m happy to advertise them on social media and the local press if so!! Currently trying to decide between a normal bike and an ebike- I’m likely to only be 4-6 months post transplant and far from full fitness so an electric bike might have to be the answer.

I’ll decide after I’ve had the transplant whether to go ahead or not – I think I have till Christmas to register. So we’ll have to see whether there are any complications and how well I am before I commit.

In the meantime, I’m trying to look into whether there are any benefits in doing my transplant privately. I’d get the same treatment I think, and at the same hospital, but possibly sooner and even more importantly, I think I’d be guaranteed a private room. I was lucky at the Marsden last time. Because we had young children they were able to give me a single room from day one (I also suffered from sickness and diarrhoea from day 1 so would have been put in a single room anyway). But that isn’t guaranteed a second time round and it does worry me. It’s not nice sharing private intimate details with strangers (other than on a blog of course 😂). So I’ve asked my consultant if it’s something worth looking into and we’ll go from there.

The Stem Cell Harvest v2 – Day 2 (post plerixafor)

So after Wednesday’s disappointment, I went back that evening to receive plerixafor, a £5000 injection that helps move the stem cells from the bone marrow back to the blood for harvest (so so grateful that we have the NHS in this country – worth every penny of tax that Nick and I have ever paid!).

As I mentioned, I’d been warned about sickness and diarrhoea, but luckily only felt a little queasy and poorly. Unfortunately it also causes insomnia like the G-CSF injections and that seemed to be the one downside. Another night of no sleep (not helped by a fox deciding to get randy for an hour at 2am!) meant a tough start to the day.

That said, the day itself went fairly well. I’d been so nervous after the harvest I had back in 2011 when they’d had to go in my groin (and hit a nerve in the process!), that I have nothing but the utmost praise for the staff at the QE in Birmingham.

They put me straight onto the machine when I arrived at 8am and had managed to find veins with limited issues. We did start to have the same problems as in 2011 but they were great at slowing down the machine so that it wasn’t an issue.

As you can see from the photos, basically what happens is that they put a canular into one arm, and a large needle into the other and turn the machine on!!! The process isn’t at all painful which is good but it did cause what feels like a vibration through your whole body, and tingling and numbness in my hands and feet. This was due to my calcium levels dropping (all part of the process) and they just keep giving you tablets to help. (Luckily, it wasn’t as bad as 2011 when I’d ended up on a calcium drip and shaking.) I think the only other issue was when the big needle came out of my arm – you’re meant to keep your arm in one position for the whole 8 hours and without even realising it, I moved it at one stage so there was a slight panic trying to reset everything in opposite arms! But thankfully, the amazing team got it all started and the machine back working.

Throughout this, they’d done the same CD34 test at the day before to try to make sure that the plerixafor had worked and whether they were likely to get the stem cells. Around 1pm, they got the results which said that I’d only doubled my count and not quadrupled like we needed, so there was a bit of a concern about how many stem cells they’d actually get out.

Thankfully, the calculation the actual machine said was right and we managed nearly 1.5 million – I only needed 0.5 million to add to those that had been harvested back in 2011. So come 6pm last night, Nick finally got me home where I managed to get a much better nights sleep. That will be the last stem cell harvest I ever have to do as you’re only ever given 2 autologus transplants.

So now it’s another waiting game. I go in next week for lung and heart tests, and assuming that all is good there then I have to wait for the QE to start doing transplants again. We get the feeling that this won’t be before mid-August, but other than that don’t know when. The hope is that it will be before the winter when there is of course more risk from illnesses, a second wave of covid, etc.

I’d like to say thank you to everyone for all your lovely messages of love and support. I can’t begin to say how much it means at a time like this. It was 11 years ago today that I first got diagnosed with multiple myeloma, and never once have I felt alone with it. From Nick’s unwavering love and kindness through to all of our family and friends. I am so lucky to have you all around me. Thank you

And so it begins…

Over a year since I relapsed and we’re now on route to my transplant.

Today I started on my G-CSF injections. These are used to stimulate my stem cells and I have to take three, every evening for 4 days. I actually don’t mind the injections as I’m lucky enough not to have a fear of needles. I’m not sure about the rest. Like with childbirth, I have parked my previous experiences 10 years ago, well in my internal being. Somewhere not to be revisited unless I read back on my blog (hmmm, why did I decide that was a good idea?!?!)

So, there is a chance of some side effects…bone pain and flu like symptoms the most common….the rest too scary (and hopefully too unlikely to even bother mentioning!!). So I took the first ones tonight and then followed them with a couple of G&T’s….didn’t read whether alcohol was recommended with them …. oops!

So, off to bed now and hoping for a decent nights sleep. I haven’t been sleeping well recently. Lots of dreams. Possibly anxiety related although I don’t feel particularly anxious. Might succumb to another sleeping tablet to help though. Why fight it.

Take two – we’re off again!

So, eleven years after my initial diagnosis, and 9 years since my first transplant, we’ve now been told that it’s time to harvest my stem cells in preparation for my second Stem Cell Transplant. The date for harvest (not transplant), will be the 15th July.

I have to say, whilst I’m naturally a bit nervous, I’m also really pleased that we’re moving forwards with the process give that I’d expected to have had my actual transplant by this point in time. Bloody covid-19! Whilst the QE in Birmingham still isn’t open for Stem Cell Transplants as they’re being super cautious, this means that once they do open up, hopefully I’ll be in a position to go in once it’s my turn on the waiting list. We’re quietly hoping for August/September.

So, what is a stem cell harvest? Basically, it is where, in this instance, they will take out my stem cells, in order that when I go in for my transplant and they give me a mega high dose of chemotherapy, that they can give those same stem cells back to me, to help me recover. The chemo puts my immunity at zero – without the stem cells it would be almost impossible for me to recover.

In order to harvest my stem cells, they’ve given me what are called GCS-F injections which I have to self inject for the 4 days before I go in. 3 injections every evening (my own fault for putting so much weight on!!). This should be fairly simple, although it is quite likely that for these few days, I’ll have a lot of bone pain, and possibly feel quite flu like.

I’ll then go in on the 15th July and they will test my blood to see whether my stem cell count looks high enough. If it does, I’ll be hooked up to a machine and all going well, they’ll pump the stem cells out and then let me home about 5 hours later! It wasn’t quite that straightforward back in 2011, so keep your fingers crossed for me as it’s one of the few processes I’m petrified of!

We’re hoping that a) my blood count is high enough and b) that they get enough stem cells on day 1. But if my count isn’t high enough, I’ll be given an injection that evening to help stimulate my cells further and will then go back the next day. I can have up to 3 of those injections I believe. I’m lucky in that I do already have some stem cells from the Royal Marsden when I had my first transplant so hopefully this won’t be a massive deal.

All in all this is good news. My general paraprotein level is staying stable thank goodness, so there is no rush for the transplant. But that said, it would be much better for me to have it over the summer, than in the winter when a pandemic repeat is a possibility, along with all the other winter bugs that float around!

Just want to say thank you again to all of you who put up with my rants and moans on here and who help support us through all of this….one day I might even shut up!

A little bit of happiness

I thought I really ought to write to update after my last, fairly down, post.

Life is a little bit cheerier now. Not perfect, but then again, whose is? But I’ve increased my antidepressants and that has helped me to be able to pull myself out of that dark spot that was there. I’m so touched by the people who got in touch and who helped me during this spell too. Good friends are said to be hard to come by but I seem to be blessed to have lots surrounding us. And it goes without saying, that Nick was there supporting me fully throughout.

I’m definitely in a better place now, although I’m quite nervous about the easing of lockdown. It’s interesting to see on the news and on Facebook how many people are just quickly moving towards the old ‘normality’. We on the otherhand, are pretty nervous about the whole situation. At the end of the day Covid-19 is still there and just because the government tell us that we don’t have to shield anymore, doesn’t mean that we feel it is safe to stop everything that we’ve been doing for the past 4 months. After all, if we stop and one of us gets ill after all this time, how will we feel about it? Just for a bit of freedom.

I have to say, I have no wish to go clothes shopping, to go to the cinema or even to go to the pub. Not while we have to socially distance. If things are that worrying, there is no point in us risking those things. But I still miss catching up with friends and family, popping to the shops when we run short, playing netball and having the kids out and about. Oh, and the cleaner (as spoilt as that makes me sound!).

I would harp on about it, but I’d imagine the people reading this are linked to us or myeloma anyway and probably aren’t the people going to the beach or holding parties. But if you are, all I’d ask, is please be careful. Otherwise everything that we (and especially our teenage children) have given up, is almost pointless if we end up back where we were in March when lockdown started. Now isn’t the time to have drinks parties in the back garden just because no-one can see, or to stop thinking about the fact that even if you don’t get ill, you can pass coronavirus on to those that could get seriously ill.

Anyway, this wasn’t meant to be a rant about that, but more to say that things are a little happier in this household. Still bloody hard, but a little easier than they were! I’m back to hospital tomorrow for the next round of Dara…hopefully it will keep me on the straight and narrow until my Stem Cell Transplant is back on the cards.

Daratumumab: results, side effects and the impact of Covid

I’ve been thinking quite a lot about my treatment in the last few days for a few different reasons so I thought I’d get it all down in a blog post.

I was back at hospital last Monday for my latest dara infusion. Slightly less worrying than the previous visits as the hospital seemed totally on top of everything covid related….and I suppose after my visits to two other hospitals for my broken foot, I’ve had to relax a little about it all (please see previous post if this means nothing….for some reason, I don’t think it posted properly). Anyway, I got my results on bank holiday Friday, and they were at 7.2. So up a tiny bit but pretty much stable for now. A lovely start to the weekend and another excuse for a glass of wine (hmmm, who actually needs an excuse in lockdown??)

Stability has to be a good thing while the world is such a precarious place, but with cancer treatment opening up now that the initial crisis has calmed a little, it is probably sensible that I keep on top of what my options are and the questions I should be asking of my consultant next time I am in touch with him. It seems unlikely now that my numbers are going to go down dramatically now so I need to find out:

  1. Are my numbers low enough that they would consider harvesting my stem cells without further treatment, and if so, would they be prepared to do that now? As far as I remember, and because the QE don’t give me chemo for this process (unlike when I had the process at the Marsden), the process wouldn’t lower my immune system and so doing it while covid is around, might not be an issue. It is a day treatment too.
  2. If my numbers aren’t low enough, what will be the next treatment that I am put onto and would that change depending on how covid-19 is impacting on life? I don’t think they would now put me on the DT-Pace that I was so worried about originally because it impacts the immune system too much and there are other options that are being allowed due to coronovirus. So, if they think I need to have additional treatment, I think I would rather have it now while Nick is at home and the kids are off school, than have it later down the line when they might decide DT-Pace is the answer after all! I’m also potentially having more side effects from the dara than before which I’ll mention later.
  3. Are Stem Cell Transplants on the agenda to come back? For a while, transplants have been seen as less favourable as ongoing treatment regimes due to the fact they are hugely intensive, make patients very ill for around 2 months, and can’t be guaranteed to work for everyone. Last time I had mine though I was lucky enough to get 8 years remission (for many, two is considered good!), and effectively be treatment free – whilst I had maintenance therapy, after the first year, it didn’t impact my life at all! So I’m interested to be clear that they will be used again. I’ll be absolutely gutted if this takes them off the table as I don’t want to be on chemo indefinitely.

The other main reason I’ve been thinking about my treatment is because I’ve had a lot of wrist pain for the last 6-8 weeks. At first I just thought that I’d been doing too much and that it would ease off. Unfortunately, that hasn’t happened and not only has it got worse, but my other wrist has also started to show symptoms too. It could be something like tendonitis or carpel tunnel syndrome, but when I looked up the side effects of dara, joint pain is one of them. And when I asked the myeloma forum that I’m on, a number of people who are at the same stage as me for the treatment, are having a similar issue. It’s pretty painful when it does hurt, so if I am going to be asked to change treatment, I’m wondering if now wouldn’t be a good time with the hope that this side effect might diminish. Along with my eye cysts. Bowel Issues. Bone weakness. And all the other things that can really get you down on a bad day!!!

As I said to Nick this morning, I try really hard to be positive most of the time and see things as being good at the moment where my treatment is concerned. But it can be really hard when I look in the mirror and see a fat, broken lady with cysts on my eyes and a feeling that there is little I can do about any of it. I think my eyes really depress me as they were the only thing I actually used to like about my appearance anyway. Anyway, I’m not too miserable at the moment but really need to sort out these side effects!

I can’t see them making any final decisions on anything until they have my next lot of results, but we’ve asked for the opportunity to talk through the questions above and see where we stand. In the meantime, I’ll keep busy doing work on the house and homeschooling (if that’s what you can call it!) the kids.

Thankfully Nick working at home means he can help with the numerous things I now have to bow out of with a broken foot and painful hands – he’s a gem as always. We actually celebrated our 18th Wedding Anniversary the other day which was lovely. We cooked together, sent the kids to the other room and had some quality time just the two of us which was fab. Oooh….and there might have been a bit of champagne and fine wine involved too – thought I’d share a couple of pics!

And change……

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!

How communication makes all the difference

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.

Facing a New Future

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.

2020 – A (Belated) New Year!

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!