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.

Summer Daze

Sunflower

Cancer requires one to slow down and simplify their life. Predictability in ongoing routines helps me to manage an otherwise unpredictable disease. Finding peace in a time of uncertainty is the goal. 

Once a month, I receive a dose of immunoglobulins. It’s a support treatment. It doesn’t kill cancer cells. Instead, it boosts my immune system, which is depleted of defenders by my blood cancer, multiple myeloma. The immunoglobulins help to protect me against bacterial and viral infections. Things like the common cold; things like Covid-19.

Due to my “sucky” immune system, I also practice preventive measures to minimize unduly exposing myself to random bugs. I was social distancing before it became a meme. I learned from nurses at the time of my stem cell transplant in 2008 that an emphasis on personal hygiene would prolong my life. It’s simple, common sense behavior. For 12 years, I’ve avoided salad bars, chosen not to fly, and washed my hands … a lot.

Bachelor Buttons, Cosmos, and Japanese Poppy

My health is decent, managed by a series of treatments that have not changed in some time. The plan is busy but not arduous: I take oral drugs at home and have two monthly visits to the infusatorium. One is for a dose of the aforementioned IGG cells. I receive a cancer killer drug at the other visit. After that, I get a few weeks break before doing it all over again.

In order to combat the disease, my oncologist designed a coherent plan. It’s based on science. If necessary, we adapt when the cancer develops wrinkles that need smoothing. 

These days, much of the rest of my life is similar to everyone else’s. That’s assuming they are following the prevention methodologies of social distancing, personal hygiene, and mask wearing. With the coronavirus we all have immune systems jeopardized by an infectious disease. 

Finding peace in my wildflowers.

Unfortunately, many people refuse to adhere to practical preventive measures. Why is it that there is blatant disregard for common sense? It starts with leadership. Our president refuses to model safe behavior.

In fact, he stumbles to be relevant in multiple crises. Obviously, he missed his chance to lead. Mayors and governors act decisively. They govern. The president, however, fails to articulate a clear message. He muddies the water with “gut” assessments of biology. And, his repeated contention that fewer tests will lead to fewer cases, murders logic. 

The misinformation, in conjunction with a lack of direction, lead to an increase in the infection rate. More deaths follow. The economy flounders as millions of Americans cannot work. All this for want of a national plan to control the pandemic. 

It’s hard to find peace under this cloud of uncertainty. Things must change. Leadership must be found. Be sure to vote this November. Your life may depend on 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.

Deserted Streets, Empty Spaces

The Ruddy Duck on Oak Street, with some good advice.

In the early spring in this year of the pandemic we live in a house on a street that divides the city from the county. The trees in the fruit orchards nearby are past peak blossom and west winds scatter their petals onto the pavement. Strangers walk by the house, in groups of two or three or alone. Some wear masks, some don’t. The roads are quiet as families shelter in place and many are out of work and few cars drive by.

Downtown, some retail businesses operate a version of what was once a normal schedule. They restrict access to limit exposure for customers and staff. Hotels are closed to deter tourists. Restaurants provide takeout meals only, which further discourages outsiders. Deserted streets and empty spaces prevail.

In my garden, I plant petunias and nasturtiums in the sunshine. Coleus plants go where indirect light filters through the overhanging branches of trees. Birds chatter and sing and bathe in a concrete trough, oblivious to the worries of us humans.

Portway at midday.

At the hospital, which I visit twice a month to treat my cancer, everyone must wear masks. Nurses, in the infusatorium, move among us like bees attending a hive. They set IVs, adjust the flow of chemo drips, and take vitals. 

The coronavirus has yet to deplete the hospital’s resources. Gloves, masks, face shields and paper gowns seem plentiful. These protective measures minimize the dangers. True safe distancing, however, is an illusion one accepts in order to continue treatment against the more visible foe of a malignancy.

As of the 26th of April, our town has just five confirmed cases of the disease. No one has died and none of the five are hospitalized. The air is clean to breathe, the colors of spring bright, yet concern about the future mars the improving weather.

Mike’s Ice Cream, normally a hub of activity.

In the last month, global deaths from the coronavirus occurred at a rate of 50,000 every eight days. The elderly carry the load of this mortality. Paeans to beloved grandparents pepper human interest stories in the media. Many die alone, in the twilight of their lives, absent the providence of human touch and the presence of loved ones.

Illness and death aren’t the only factors in the equation that defines our current hardship. Restrictions on movements and livelihoods can lead to isolation. For many, financial ruin is a reality. Everyone feels the weight of an uncertainty that goes on and on and on. Bailout checks signed by an empathy challenged president won’t soothe the anguish. Weeks become months, and a sticky cobweb of contagion adheres to our consciousness.

We all want something settled and predictable to counter the chaos caused by Covid-19. Patience is our ally. Hanging in there is good advice.

Cycle 5 Week 18: Staying at Home

With everything going on with COVID-19, I’m staying at home and only going out for essentials (e.g. groceries, to refill prescriptions) or for chemo treatment.

I’ve completed my 2 sessions of radiation to eliminate the myeloma lesions in my mouth. Treatment was divided over 2 days, was painless, and I’m now focused on post-radiation oral hygiene (e.g. brushing with a special toothpaste, using homemade mouthwash, remaining hydrated) to reduce the risk of infection.

My March monthly blood test results continue to trend in the right direction. My cancer levels dropped to 47 from 48 in February.

I’m feeling alright and staying positive.

Staying @ HomeStaying at Home

M protein (g/L) (if 0, then no cancer detected)
Mar = 47
Feb = 48
Jan = 50
Dec = between 47 and 48 (began chemo)
Nov = between 40 and 42
Oct = 29
Late Sept = 21
Early Sept = 16
Aug = 13
July = 6
June = 5


I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.

From December 2019 I’ve been on Darzalex (Dartumumab), an IV chemo with Velcade (Bortezomib), a chemo injection + dexamethasone.

Lynn Creek @ Varley Trail - Lynn Headwaters Regional ParkFeb 2017: Lynn Headwaters Regional Park – North Vancouver

The post Cycle 5 Week 18: Staying at Home appeared first on Fade to Play.

Myeloma and Covid-19 – this strange world

So a few weeks ago I wrote a post in a time that felt so surreal. Nothing has changed, if anything it all gets weirder. Covid-19 is changing the world by the day and I honestly don’t think much will go back to the old ‘normal’.

For us as a family, once the rest of the UK went into lockdown, things have stayed largely the same as they are for others. Until today.

I have to say, that whilst I found the first two weeks really, really hard, the last two have become easier. I think I was so scared about how myeloma and coronavirus would mix, whereas now I have learnt to let that go….most of the time. Perhaps it got easier when it wasn’t just us doing the isolation piece – is that really selfish?

We are lucky that we have a spacious house and garden that has meant that our 3.5 weeks of isolation hasn’t felt cooped up. The children have home schooled well and we’re trying to help them to mix it up with dog walks, cycle rides, card games, and other things…anything to keep their mental health stronger…and ours! The same goes for us. We’re trying to make the most of our time with the kids, with each other and in the house. Lots of gardening (it has never looked so good!), decorating (lockdown hit before we could get the decorator in!), walking and cycling. Two meals a day all together, family boxsets and more facetiming than ever before. Oh, and courtesy of Nick, Sam is now sporting this wonderful haircut….he’ll never be allowed it again….and to be fair, he only did it to try and add to his fundraising total for Myeloma UK (pls sponsor if you haven’t – even a pound would be great!)

This week things are changing again though. I am currently writing this whilst I’m sat in hospital waiting for my monthly dartumumab infusion.

Mask, gloves and glasses all in place to try and reduce the risk of picking anything up while I’m in. I can’t believe when you’ve isolated for nearly a month, how scary it has felt having to come somewhere public again. Especially when I knew that staff on the team have had the virus! I’m just pleased I’m here this week and not last week, when apparently, staff weren’t wearing masks or anything. I’d even brought in masks for them, (thanks to my sister kindly donating them!), but thank god they weren’t needed. I didn’t want to look fussy asking them to wear them, even though I knew it was a fair request. Despite my fear of being out and about, there is an element of relief at seeing people. Of a gladness for human interaction, face to face. Even the car journey to the hospital felt like a blessing of some kind. It’s another reason to hope that we will all find something to be grateful for at the end of this viral pandemic.

So the downside of my hospital visit…We’ve decided that I will self-isolate at at the end of this. I don’t think I could forgive myself if I took anything home and the kids got ill. Not when I have a choice unlike so many of the amazing people out there who are still working to keep the country running. So, I will be going straight to my room when I get back – do not touch anything, do not pass go. I had big hugs with Nick and the kids as I left for hospital, and they will be the last ones for 12 days. I’m not quite sure how hard this will be. I think I’ll get lonely but imagine there’ll be lots of facetime and zoom catch ups with friends and family. I’ve got a couple of jigsaws, lots of books lined up, and we’ve moved the TV to our bedroom! I actually think it might be harder for Nick who is now not only working fulltime, but having to manage the kids over the Easter holidays, cook, clean and keep on top of everything! I’m very lucky to have such a capable and lovely husband (and yes he reads this blog 😉 )

But this period of time is affecting so many people. I have family (and friends) who are about to have a baby, others who have businesses that are up in the air at such a tough time, and others who have been separated from their families. And others who choose to put themselves out there to try to resolve this strange and terrifying virus – nurses, teachers, civil service staff plus many more. The whole world is worried – we are no exception. This blog feels slightly self-indulgent as I get further through writing it. But perhaps one day I will look back and it will be a record that will help.

To everyone, please stay safe….and stay at home. With much love.

xxxx

Today Will Not Be Here Tomorrow

Meanwhile, someplace in the world, somebody is making love and another a poem.”

From Figuring by Maria Popova

Periwinkles, ducks, and clouds. Hood River waterfront on 3/20/20.

I fed hummingbirds all winter. Each time I thought they had departed for a warmer climate, they would appear and take a big slurp from the feeder.

I received two petunia plants in September. They continue to flower. I did not tend them. Still, they survived outside, in northern Oregon, on relative humidity and indirect light.

This is unusual.

In late January, following our return from a Christmas vacation in California, the first news of the coronavirus came from China. The world scoffed aloud, “Hmph”. Now, barely two months later, it stammers a collective, “WTF”. The upheaval is astounding.

The Columbia River looking west from The Hook in Hood River, OR. 3/20/20

Worldwide, half a million people are infected with the virus. More than 25,000 have died. The travel industry needs a ventilator to breathe. Cruise ships are floating petri dishes. Professional and amateur sports suffer in an induced coma. Many states have closed schools. Shortages exist for supplies of hygiene related products. Restaurants across much of the USA shutter their doors in adherence to social distancing. Mayors and governors issue sheltering in place edicts. Bustling downtowns look deserted. The stock market plummeted to record lows, millions are suddenly unemployed, and everyone with a 401k is hyperventilating.

My ukulele-a Mike Pereira “Cali” Baritone.

To the rescue, the federal government …? Wow, where to begin? The kindest thing I can say is that our president’s leadership has been sub-optimal. Evidence of the country’s unpreparedness is matched in degree only by the administration’s improvised responses that, thus far, promise but don’t deliver. Congress, prone to partisan dithering, slogs along. Emergency relief is imminent, albeit late. More will be necessary.

Are we all going to die? No. But, it’s possible someone we know will. Better leadership and foresight could have minimized the number.

I belong to one of the high risk groups. I am older. And, I have a suppressed immune system due to my cancer, multiple myeloma. Fortunately, I am a home body by nature. Social isolation is not a personal hardship. I read, I write, and I play my ukulele.

I am 12 years out from diagnosis. Like those petunias in my front yard, I exist on the relative humidity of my good luck. My anxiety about the Covid-19 virus is tempered by experience. The grim prospect of mortality is an acquaintance. I am no more susceptible to contracting the virus than you. However, I may have a more serious response should it come my way. So be it.

Closed the waterfront to walkers on March 22nd

Our fragility as a species is revealed by a microscopic organism. Knowing better, we nonetheless chose to be unprepared. The current administration dissolved pre-existing institutions established for a menace such as Covid-19. Now, we pay the price for that choice.

Similarly, we will pay a price for our indifference to the threat of climate change. It’s cheering to see hummingbirds visit during the gloomy days of winter. Remember, though, this is unusual. It’s not equivalent to the Australian brush fires or 69 degree temperatures that recently occurred in Antarctica. But it serves to remind me, overwhelming evidence exists of this threat to humanity.

The coronavirus teaches us that calamities occur that effect all of mankind. It also shows that we can respond unilaterally for the greater good of everyone. We will survive Covid-19. Climate change will be a much more formidable challenge. Let’s hope we choose to be better prepared for its consequences than we were for this disease.

Now, a song … 

Today Will Not Be Here Tomorrow

The latest numbers …

The Drill