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.

Happy 9 Year Birthday

Just dawned on me it is my 9 year birthday today – 9 years since I had the stem cells back that gave me everything I’ve had since – so lucky 💕💕

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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

Blood tests

I haven’t had my regular blood tests (plus Bence Jones) in several months for a variety of reasons, mainly the Covid-19 lockdown, then the slow reopening here in Italy.

On Monday, I finally decided to make an appointment at the lab where I always have my tests done. I went there yesterday morning.

I got there early and had to wait for about 15 minutes. Things have really changed, compared to the pre-Covid era, I mean: a nurse greets all patients outside the lab building and makes the early birds like me wait outside. Much better…I feel safer outside, anyway.

So here’s the new procedure: you wait outside until the time comes for your appointment or until your last name gets called. At that point, you have to rub your hands with disinfectant from an automatic dispenser (I used my own hand sanitizer, though) and then have your temperature taken with a non-contact forehead thermometer.

Inside, in the waiting room, you can’t just sit anywhere, the way it was before. Social distancing is the rule now. Before, there were about 35-40 seats. Now there are 5 or 6; the others are taped off.

Oh, and, of course!, goes without saying, you have to wear a mask at all times, even while you are waiting outside. In Italy, pretty much everyone understands that it has nothing to do with politics (duh), and that it’s just PLAIN STUPID and POTENTIALLY VERY DANGEROUS not to wear a mask.

Besides, in any case, it’s still the rule.

Case closed.

Yesterday morning I was actually wearing two masks–a surgical mask underneath a cloth mask. That is my new norm: whenever I leave the house, go into stores or any type of enclosed public space, I wear two masks, even though the rule is one mask (at least). Stefano wears two masks, too.

Can’t be too safe. I am well aware that I have a weak immune system…no idea what Covid would do to me, and I really don’t want to find out. Neither does Stefano.

Anyway, compared to other countries that have reopened way too soon, Italy, now in Phase Two ( = living alongside the virus), is doing quite well. Covid-19 hasn’t disappeared, but the infection and death rates are way way down. I just hope that people returning from abroad, and tourists of course!, won’t begin spreading Covid-19 here again.

That’s my main worry: Italy was THE first European country to shut down and one of the first to reopen. We don’t want to go through another lockdown. Really don’t. That said, I am comforted by the fact that all the people I have seen out and about here in Florence are wearing masks.

And, you know, life can still be enjoyed, in spite of these restrictions…Perhaps I should have written, “thanks to” these restrictions. We know that wearing a mask, washing our hands frequently, keeping our social distance, and following the rules set by the medical and scientific communities, can keep us safe. I simply would not be able to enjoy being in a non-safe environment right now…with maskless people, for example.

Anyway, to give you a quick example of how life can be enjoyed, Stefano and I have EATEN OUT three times in the past few weeks. Yes, we have eaten out…with friends…in RESTAURANTS. Very exciting, after so many months of being cooped up inside our homes.

I admit, the first time was a bit scary, but we have always chosen places with outside tables…Every member of the staff (from cooks to servers) has to wear a mask, the tables are NOT close together, and so on. It was so nice to eat out in a safe way…

So, it can be done…!

The Stem Cell Harvest v2

8am: So five days ago I started prepping for my stem cell harvest which is taking place today. It involved 4 days of G-CSF injections which stimulate the production of stem cells so that there are enough of them for today’s harvest.

I think I’ve been quite lucky. The pain hasn’t been too bad, helped I think by the fact I’m already on pregablin, a treatment which blocks pain by interfering with nerve signals. It also helps deal with anxiety so I’d imagine it’s been great in reducing issues. It’s not been totally problem free, and I have had throbbing pain in my back and the base of my skull at times….I can only liken it a bit to labour pains? But since I’ve put that to the back of my mind, I couldn’t even swear on that. Last night was the worst but perhaps there was a level of anxiety in there about today that made it worse? I ended up getting up at 5am and watching The Blacklist as I couldn’t get back to sleep.

It’s all been much better than what I remember last time, so fingers crossed this will continue throughout today. I’m now sat in the Apheresis ward where they have just taken my blood. They will do what is called a CD34 blood test which will check the predicted level of stem cells. I’ll have to wait for a couple of hours for the results of that, but they’re assuming that I’ll be ok given I only need half a million cells (To put that into some sort of perspective, first time round at the Marsden, I got 4 million cells. You generally need 2.5 million per transplant). We’re expecting it all to be fine to go ahead today given how few I need so hopefully that will be the case!

10.15am: Gutted. Just found out that my count is only 8 and that it really needs to be 25+ to be worth them putting me on the machine. So that means that I now have to go home and then come back this evening when they’ll give me a drug called Plerixofor. From what I understand this is a pretty expensive drug, but it is meant to quadruple the count so I should be ok to come back tomorrow. It does cause sickness and diarrhoea so I’ve got that to look forward, alongside more bone pain I imagine.

It gives us an added complication as Rebecca is going off on her DofE expedition tomorrow too (isolating on return we think!). Poor Nick will have to drop me here at the hospital at 8am again, and then drive down to Hereford. Bloody covid means that no-one can help us with this one either.

Oh well. Hopefully tomorrow they’ll get enough stem cells in one go and I won’t have to come back on Friday too.

Dancing in the rain

“Learning that life isn’t about waiting for the storm to pass, it’s about dancing in the rain.”

That sentence is the byline of my blog. I have to admit that it’s been a lie in the most literal respect, as I have never liked the rain and wouldn’t normally choose to walk in it, let alone dance. However, life is strange and sometimes brings you experiences you didn’t know you might need or want…

Before I elaborate, as an annual update… I passed my eight year stem cell transplant anniversary in May and remain in remission and in mostly good health. By the way, my lovely humble donor (see my previous post) is now pregnant and awaiting the birth of another life in late July. I’m secretly hoping it might coincide with my own birthday, because I like patterns and connections.

Anyway, due to my permanently compromised immune system, I have been keeping myself at home since early March, before the official pandemic lockdown in England. Despite living next to a beautiful nature reserve – the reason I bought a house here – it has been difficult to take regular walks there, because the paths are narrow and many people weren’t even attempting to maintain two metres distance from me. There were also a lot more people around than usual. This often meant I had to get off the path into the bushes and sometimes stay there for several minutes, while a stream of pedestrians and cyclists passed by, not seeming to give much attention to the need for distance; often not even acknowledging me waiting for them to pass.

It made the whole experience highly anxious, when the act of walking was supposed to be for both my physical and mental well-being. I began to feel that I couldn’t safely go out. At one point, I considered getting flashing lights or a sign to let people know that I am at higher risk than most. I haven’t entirely abandoned this idea; in fact it’s an art work in progress. 

After one very sunny Sunday, when the whole world seemed to be out in the nature reserve, involving a string of encounters with thoughtless, rude people, even being told I was a stupid woman and should walk somewhere else; and culminating in being practically run off the path by a large group of men on bikes being obnoxious and shouting that it was all a hoax when challenged, I stopped walking there if there was any chance of large numbers of people. In effect, this meant not going at the weekend, or even during the week if the weather was warm and sunny.

Instead, even now, when I’m generally feeling less anxious about briefly passing people, but more people are paying even less attention to keeping distance, my preference has turned to walking when it’s grey, cloudy, cool or cold and yes, even when it’s raining. I wear my headphones and listen to a shuffled mix of music, so on any one walk, I might hear songs that make me slow down and contemplate existence; sometimes cry; fierce punky beats that get me stomping along; mixed in with upbeat, happy tunes. I tend to go with the flow and let myself be moved emotionally and physically by whatever comes on. So finally, yes, I have been dancing in the rain… and really appreciating the freedom to do so.

The metaphor of my byline has come into being in a more profound way too, where the rain is not only a passing storm, but a cloak of safety and comfort in these anxious times, rather than grim, depressing dampness, as I would have perceived it in the past. I haven’t even minded getting a bit wet.

By the way, the video above was filmed by me on one of my walks.

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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.

Friday things

well, not good news on my labs:(

My kappa light chains went up to 176mg/L so a 66 point increase.

Lambda only to 13. mg/L ( normal as I am not Lambda myeloma)

ratio up to 13.44 so a 4 point increase.

Not happy but what can you do. I will see my doctor at the end of June. Not sure if I’ll do the video conference or just go down to Sac. Probably I’ll go down. I mean he isn’t going to start treatment yet anyway, but I’d like to check in physically.

We’re still looking at when I hit 500 mg/L so that maybe January. Or if things speed up sooner. You can’t really tell how it will go except it won’t go down.

I won’t lie that it doesn’t upset me but since this month is my 15 year since diagnosis( I’ll write about that later), you do get somewhat hardened to the fact that remission isn’t forever.

Other matters, B had his BMbiopsy Wednesday and was pretty loopy from the drugs but he said it went well( if enduring one of the most painful procedures you can go thru, can be ok).

I haven’t done any grocery shopping since the Costco Instacart last week. But I will go tomorrow as I need salad stuff and milk. I’d like to get to Trader Joes maybe next week.  I guess it all depends.

We’re in for a cool down here in Northern Ca. It’s been hot but not 100 degrees hot, just 95 degrees hot.

I read in the WP another Confederate statue was taken down. It was some Admiral. They did it either at night or early morning and it was whisked away. Good Riddance.  I also read that Lafayette Park where the peaceful protesters were attacked by the police used to be a slave market. One of the biggest. maybe Trump should read( ha ha ha) some history about the cruelty of selling black people.

That’s all I’ve got.