Paclitaxel – How do you eat an elephant?

This cat has got better eyebrows than me…

Posted on June 5, 2019June 5, 2019 by WeeGee

Hello and welcome back to WeeGee Land where the sun is shining, the chemotherapy is flowing and – I regret to inform you – the eyebrows have STILL yet to sprout. Man, do I miss my eyebrows….

Eyebrows 872b24c808caf0add2ec2574ce52a301 — This cat has better eyebrows than me and I can’t stop thinking about it…..

Since last we spoke, there has been no drama whatsoever for me to contend with – huzzah! At my last meeting with the oncologist, we agreed to reduce the weekly dose of paclitaxel (that’s the one I’m allergic to) slightly, mainly to help manage the quite extraordinary bone pain it had been causing. The good news is this seems to have done the trick – the pain is now well within manageable levels and, as an added bonus, my liver seems to be coping a little better with the toxicity. My next chemo is scheduled for Monday and – GET THIS – once that’s out of the way, I’ll only have THREE more chemo treatments left to go. I don’t want to tempt fate, but there’s an outside chance I’ll be finished with the chemotherapy by the time I turn 40 in August.

I guess the other news is that I’m currently signed off work. Somehow, I managed to get through twenty weeks worth of chemo while working pretty close to full time, but in recent weeks, I’ve found it more and more of a struggle. Up to a certain point, working was contributing to my overall sense of well-being, but over time, that changed. The chemo tiredness was really beginning to creep up on me, and I had started to worry about what I could realistically contribute at work. In the end, it became about where my priorities were at and, after a little thought, I decided that every single ounce of energy I have needs to go into getting through the last two months of chemo. I guess it was always going to be a balancing act but I’ve stepped back and for now, work can wait.

funny-ecards-the-nicest-way-to-make-your-friends-happy-08

Anyway, without work to think about I am basically living the life of a retiree – I spend a lot of time at medical appointments, I potter in the garden, I read, I write, I knit, and I shuffle about at canals on weekdays. Apart from the whole medical appointment thing, I don’t even completely hate it….If anybody needs me, I’ll be busy being a lady of leisure. Sorta….

Foxton IMG_5155 — Foxton Locks, Leicestershire

Meanwhile in other news the creative writing is coming along quite nicely thank you very much. I’ve learned a lot on the ten week course and do you know what? I think I might even have at least a basic aptitude for it. I don’t think I’m going to get the novel out by the time I’m forty, but this time next year? Well. I guess you never know.

Nothing else from me today – I was conscious it had been a while since my last post so I wanted to get something down. I’ve still got plenty of more interesting posts planned – maybe now work is out of the equation I’ll get round to actually writing them….

I’ll leave you with a song and catch you next time….

Love you lots like jelly tots

WeeGee xoxox

Living with cancer

I’m still standing

Posted on May 25, 2019May 25, 2019 by WeeGee

24 weeks have passed since my diagnosis – winter has been and gone and already spring is starting to make way for the summer. It’s mind-blowing (to me at least) to think that nearly half a year has passed. Time didn’t stop as I thought it might – and while some things have changed beyond recognition just as many have stayed exactly the same.

Perhaps in years gone by I might have felt sad that another six months had disappeared and allowed myself a moment of melancholy reflection about getting older. But since my diagnosis, I take every single day as a victory. There’s no good being sad about getting older when something like cancer comes along – you soon realise that getting older is the one thing on your to-do list that you’re not prepared to give up on just yet.

NUMBER CRUNCHING

Since my diagnosis I’ve had about three million* blood tests, two million** mouth ulcers, 82 steroids tablets, 30 stem cell injections, 21 blood thinning injections, 11 infusions of chemotherapy, 8 meetings with the oncologist, 3 infections, 3 mad dashes to the acute oncology assessment unit, 2 ultrasounds, 2 CT scans, one trip to accident and emergency, one hospital admission, one PICC line in, one (same) PICC line out, and a blood clot.

STILL STANDING

Whichever way I look at it, it’s been quite an adventure. And here’s the thing – I’m still standing!

THE FINAL COUNTDOWN

The good news is that as of Friday, I’ve had the first six of my ‘weekly’ taxol/carbo infusions – this really is the home straight.

6 left A69F4BFD-D278-4B5A-8043-641B36C4ACC7 — My chemo number six face

In an ideal world, I’d have six infusions over six weeks left to go, but in reality, and given my reaction to the Paclitaxel, I’m expecting a few more delays along the way. Either way, I’ve got six more chemos left to go. Whether it’s over six weeks or over more weeks is no matter. In fact, the only thing that really matters is that we are entering THE FINAL {CHEMO} COUNTDOWN.

final countdown 2c49bc9f0e11fe96dc07248eae6df635

MEANWHILE IN OTHER NEWS

Meanwhile in other news, we’re having another bank holiday in the UK so if anybody needs me I’ll be doing bank holiday stuffs like buying books:

books CFD4A9B6-411E-4829-8957-22F485D3502C — I bought all these books today for less than TWELVE GREAT BRITISH POUNDS from the Oxfam book shop in Harborough. Huzzah!

And mowing lawns:

Chores E4A885B8-50C8-41F3-B440-480F645E298C — Does Monty Don have to mow his own lawn?

And chasing a reluctant and oh-so-wise-to-every-trick-in-the-book cat around the place trying to administer flea drops…..

Cat 5B4C5044-1803-460F-83CD-1B7C65BBB822 — This is the face of a cat who has not yet forgiven me.

Nothing else from me today other than to say I’ve got a couple of meaty posts planned for the next week or so. Stay tuned for my hot takes on fake cancer cures and the ghoulish ghouls who peddle them, whether breast cancer fundraising campaigns are too pink and fluffy, and how it feels to have a chemically induced menopause ON STEROIDS***

I’ll leave you, as always, with a little song and a promise to catch you laters, alligators….

Love you all lots like jelly tots xoxox

WeeGee xoxox

*Numbers are accurate at time of publication

** Ditto

***Spoiler alert. The answer is shit. It feels SHIT.

Living with cancer

I’ve started so I’ll finish

Posted on May 21, 2019May 21, 2019 by WeeGee

Since last we spoke people have taking to asking me how I’m feeling in myself as if I’m some kind of old person who’s just had hip replacement surgery. I don’t know the answer to the question by the way BECAUSE WHAT DOES IT EVEN MEAN – except maybe that after twenty weeks of chemotherapy I look so shitty that people can no longer, in good conscience, tell me I’m looking well all things considered?

Like shit b0526938969ee3e86eda110001c7c84cd84aec483c2e5fae8bc4da45fe31ab70

The Carbo/Taxol chemo continues to give me an absolute battering. It turns out I’m allergic to the taxol half of the cocktail, but not quite allergic enough to merit abandoning the treatment altogether. So we press ahead – a little more slowly than before. As things stand, I seem to be getting the green light to go ahead with chemo once every fortnight rather than once a week as originally planned. It’s endlessly frustrating, not least because it means that every time I think I’ve got the chemo finishing line in my sights they come along and move it back by ANOTHER week. That said, I’m told the delays are unavoidable if I want my liver to have long enough to pull itself together before it gets the buggery poisoned out of it again. Which, on reflection, I think I probably do….. and so I limp on, battle weary but determined to finish what I’ve started.

Mastermind — I’ve started so I’ll finish

Some people sail through chemotherapy without so much as a second thought but for plenty more, it doesn’t quite work out like that. For a while, it looked like I might be one of the lucky ones, that I would just breeze through it with very little detriment to my life, but alas, it wasn’t to be. It isn’t so much that I hit a brick wall (as I was so often warned I would) but that the taxane based drugs came along and brought a tonne of bricks crashing down on top of me. For the first four cycles, chemotherapy was just something that happened alongside my normal life but now it is very much something that I find ways to endure. It seems like such an obvious thing to say, but I’ll be glad when this is all over.

Of course, it isn’t all bad because nothing ever is. There are always little chinks of light, tiny reasons to be cheerful, small pockets of hope. For one thing the sun is shining in Harborough once more. For another thing I’m off work now and so I stayed up way past my bedtime reading Pat Barker’s new novel ‘The silence of the girls‘ last night and after 100 or so pages I can categorically confirm that it is a THING OF ABSOLUTE BEAUTY. And for yet another thing, there’s Gryff because if he isn’t a reason to be cheerful, I’m sure I don’t know what is….

Gryff B930FC04-3740-48B6-9EE4-A9C29FEB302B

And for another, final thing, I’ve made it through twenty weeks worth of chemo already. Even if the worst case scenario comes to pass I’ve got less than that left in front of me. I guess what I’m saying is that if I could do what I’ve already done, then I can certainly do what’s left to get done – if you see what I mean.

Like I said – I limp on.

Meanwhile in other news I have now grown a convincing fuzz on my head and – this is the good bit – it very definitely isn’t looking grey so far. Huzzah! Still no sign of the eyebrows returning though, which is a source of constant consternation. I honestly didn’t realise how attached I was to them before they went and fell out….

Ate my eyebrows 4a4c19c4bc994dbb274d76e5a6e80206

Nothing else from me today save that I hope you are busy being out there in the world having all the fun it has to offer. I’ll leave you with a song, one of the prettiest songs I know, and bid you farewell – until next time of course…..

Love you lots like jelly tots,

WeeGee xoxox

Living with cancer

Just when you thought it was safe to get back in the water…..

Posted on April 10, 2019April 11, 2019 by WeeGee

Since last I wrote I have mostly been being in hospital with, and I shit you not, a bit of a cold. I mean, I’ve always tended towards the overly dramatic but hot-footing it to the hospital with a runny nose? That’s expert level drama queen for you that is.

Dramatic cat IMG_4216 — WeeGee: more dramatic than this dramatic cat…

Of course, I’m making light of it, because that’s what I do, but my temperature peaked at 38.9 and I felt pretty poorly and fed up for a while. The good news is it was NHS to the rescue once again, and with the help of some IV antibiotics, I was home and tucked up in my own bed recovering 48 hours later.

Home sweet home E8B2802D-8788-4B96-A5F0-A34385E2796E — Home sweet home away from home

Spending time on the acute oncology ward was a pretty sobering experience and I was reminded of the ‘young, fit and healthy’ tag that has followed be around since my diagnosis: I was the youngest patient by a couple of decades and, on a ward of six people, the only one who didn’t have at least one other serious health condition to contend with as well. Surprisingly perhaps, it was also a much more cheerful place than you might imagine. I met some truly amazing women during my short stay – some of them well into their eighties and all of them facing up to cancer with some considerable aplomb. I hope that when I am old I am half as wise and every bit as brave and forthright as the women I met this weekend. I’ll certainly think of them often as I make my way through my treatment and beyond.

April is the cruellest month

I suppose what I’m really writing to say is that April didn’t quite get off to the flying start I was hoping for….

Before the high temperature/infection fiasco and just when you thought it was safe to get back in the water, my third weekly chemo was called off because I failed my blood test even though I am a swot and I HAVE NEVER FAILED A TEST IN MY LIFE. To be honest, it didn’t come as much of a surprise because I’d been feeling completely whacked since starting the Carbo/Taxol regime a couple of weeks ago. Anyway, the blood results showed elevated ALP levels – possibly indicating that my liver is not coping particularly well with new chemo drugs. Huzzah…..

We’ve done a new set of bloods this morning to see what’s what now I’ve had a week or so away from the chemo and I’m meeting with the oncologist tomorrow to discuss the plan of action. It may well be that the high ALP levels last week were a bit of an outlier and that everything is fine, or we may need to reduce the dose, or perhaps even rethink the treatment plan altogether. I’m hoping for one of the first two, not least because when it comes to triple negative breast cancer, the EC/Carbo/Taxol combination really is gold standard. In other areas of the country there are women with triple negative diagnoses fighting like lionesses to get access to this particular combination of drugs, so it doesn’t feel like something I want to give up on lightly. That said, liver failure doesn’t sound like much fun to me, so we’ll wait and see what the experts have got to say.

Take a break

All things considered I’m in pretty good spirits so there’s no need to panic about that. The doomy gloomies that were starting to gather a couple of weeks ago seem to have blown over and all is calm and easy going here in WeeGee land again. I’ve taken a couple of days out of work to get myself fully better and to keep hold of the sense of perspective that has settled around me. I love my job, and i need to feel as useful as I can during my treatment – but my job can be taxing and stressful at times. The thing is, being an awesome Information Governance Manager can’t be my number one priority right now because that spot is already occupied by taking good care of myself and being as well as I possibly can be. I’m lucky, I have an amazing employer and even more amazing line manager – I have the luxury of being able to take my foot off the gas every once in a while and right now, I think I’m due a bit of a break.

Busy doing nothing 4242C6B6-8806-4475-8E80-284021FDC929.JPG — The view from the couch. Not a smidge information, nor governance in sight….

Meanwhile in other news

Meanwhile in other news I’ve finally signed up for the creative writing class I’ve been meaning to get myself involved with since I went to the KU Big Read event featuring Gail Honeyman last October. I loved ‘Eleanor Oliphant is completely fine‘ so very much, and I found Gail’s talk really inspiring. I promised myself that by the time I was 40 this August I would at least have made a start on writing a novel. Step one is the University of Strathclyde’s Blaze course which I start next Monday so, you know, watch this space…..

Nothing else from me today, save to say that if you could keep your fingers crossed for my chemo actually going ahead this week I’ll love you even more than I already do.

I’ll leave you with a tune, which granted, is fairly miserable but it’s also really pretty in its own way, and it’s been my ear worm ALL WEEK so I can’t think of another to share anyway…..

Love you all lots, like lots and lots of jelly tots,

WeeGee xoxox

Living with cancer

We’re going to need a bigger boat

Posted on April 3, 2019April 3, 2019 by WeeGee

Okay – so all things considered, March didn’t exactly go according to plan.

The PICC line (yes, I’m still banging on about that) knocked me for six. And then I got sick. And then I realised that instead of four more visits to the chemotherapy suite I was going to have to get my head around another twelve. And then AS IF THAT WASN’T QUITE ENOUGH ALREADY THANK YOU VERY MUCH the first dose of the new chemotherapy went and knocked the stuffing right out of me.

By this time last week I was well and truly fed up with the whole blimmin’ thing. I’d been experiencing pretty spectacular post Taxol chemo pain in my bones and muscles for four days straight and it was starting to take it’s toll. I had a thumping headache, I couldn’t sleep for all the steroids, could barely think straight through the chemo fog, and although I was trying my best to keep my pecker up, to be quite honest with you, no matter what I did, my pecker was just not for upping. I tried everything, including watching Inside the Potato Waffle Factory which I had been saving for this very kind of doomy gloomy emergency and even that didn’t snap me out of it….

It was dire straits here in WeeGee Land, man.

Actual. Dire. Staits.

And then things changed….

I’ve long since subscribed to the notion that things have a habit of turning up at the right time, or perhaps, put another way, that things have a habit of working out in the end. Over the years I’ve come to an understanding with myself that when the chips (or waffles) are down – which they are going to be from time to time – I just have to find a way to sit it out because eventually something new will turn up: a new way to feel, or a new thing to think about, or a whole new direction to go in. Or this amazing picture drawn and indeed signed by Richard Osman (AKA my Pointless Friend) and used as an actual question on an actual episode of my actual favourite quiz show, Pointless.

Jaws C52A924A-E068-4656-902E-5B93FB1F45DA.JPG

How cool is that?

The backstory is worth filling in here.

First up, I have a long standing borderline obsession with Pointless for all kinds of reasons but mostly because I’m competitive when it comes to quiz shows and I’m quite good at Pointless. I once scored THREE POINTLESS ANSWERS in a ‘studio albums by REM’ Pointless Final question and it remains, to this day, one of my proudest achievements in life.

Secondly, the picture filled my heart with such gladness when I saw it on the telly box – it made me properly laugh out loud, not least because the phrase ‘we’re going to need a bigger boat’ is oft used here in WeeGee Land when things are in the process of going tits up. And I especially loved that the little man went with the calm and gentle refrain of ‘oh no’ in the face of such awful impending watery/sharky/bitey/fuckitty one-armed doom.

Finally, Mr Awesome Thing Number Five made it happen just to cheer me up. I didn’t ask him to source me a copy of the funny Jaws picture from Pointless, he just remembered how much it had amused me. It turns out he wrote to the Pointless team while we were holed up in A&E that day, which makes it just so super sweet. Yet again, I am reminded that, when it came to choosing my people, I did a pretty good job…..

Us 8819E76B-BBD4-4357-A832-32ABE0AB63A9.JPG

It’s goodbye from me

So yeah, March wasn’t quite the month I wanted it to be but it had it’s moments. And it’s April now anyway and I’ve every confidence things will be on the up and up all the way from here on in…. The tree at the front of our new house sprung into blossom what seems like overnight and that feels like a good thing. A good sign, you know, or if not a sign, just something pretty to look at for the next few weeks. And that’ll do me.

Blossom 5B4D44A8-9F3D-4878-A3E1-EC6F3729D140

I suppose the moral of the story is that it doesn’t take much to cheer a WeeGee up. Or maybe that a little gesture can go an awful long way. That picture ABSOLUTELY made my day and it didn’t cost anything but time and effort on the part of the Mr and the people he wrote to. Perhaps what I’m really trying to say is that people, in general, are generally nice…..

I’ll play you out with a song, as usual. Well. Sorta.

Love you lots like Jelly Tots,

WeeGee

Living with cancer

Once upon a time when chemo wasn’t weekly……

Posted on April 1, 2019April 2, 2019 by WeeGee

Hello, good afternoon and welcome back to WeeGee Land!

I’m sorry about the radio silence recently. I hadn’t forgotten about you or anything like that, it’s just that I was quite busy being a busy bee, and when I wasn’t busy being a busy bee I was busy being asleep. What can I say? Getting pumped full of cytotoxic chemicals on a regular basis makes you helluva sleepy.

Garden cakeF7DBE8A1-4A4F-4C19-9D55-CE10D67BCA05 — Eating cake in the garden counts as busy, right?

The last time I blogged there had been a bit of a blot on my “marching through chemo like a badass” copybook but FEAR NOT that’s all over and done with and things are pretty much back on an even keel. I took a couple of days out to put myself back together and then, when I was all put back together, I set sail again: I got back to work, and back to my life, and whether I like it or not* back to the whole chemo routine. Some days it feels like things have changed beyond all recognition since my diagnosis, but mostly, if I stop and think about it, it’s still just me trying to keep all the plates spinning and doing a passable job….

When is halfway not HALFWAY?

You’ll no doubt remember the excited fuss I made when I got to the halfway point of the chemotherapy? It’s a funny story really, because, well, yeah – that might have been a bit premature. It depends which way you look at it y’see – because it turns out there’s more than one way to count to half way. I suppose now might be a good time to mention that maths never really was my strong suit…..

When I started chemo I knew I would be having eight cycles, each lasting three weeks. I also knew that these eight cycles would be made up of four cycles of EC chemo, and then another four cycles of Taxol/Carbo. Fine, I thought – that’s all nice and clear, right?

What I hadn’t anticipated was that an EC cycle would look like four times worth of this:

Day 1: treatment (epirubicin/cyclophosphamide)
Days 2-21: rest
Day 1: repeat

But that a Taxol/Carbo cycle would look like this four times over:

Day 1: treatment (paclitaxel/carboplatin)
Day 2-7: rest
Day 8: treatment (paclitaxel)
Days 9-14: rest
Day 15: treatment (paclitaxel)
Days 16-21 rest
Day 1: repeat

Or, to put it another way, for the first four cycles I had to rock up at the hospital every three weeks, but for the second four cycles they’re going to need me to show up every week. As in Every. Single. Week. For TWELVE weeks.

So that’ll be fun…..

It was a bit of a blow, coming as it did, on the back of the broken veins/PICC line stuff and the day trip to A&E but, hey, I had a WHOLE day to get my head around it before I was sitting in the chemotherapy suite getting the second-half-but-only-if-you-count-weeks-not-treatments underway.

Nevermind, eh? I’ve got two under my belt already and I’ve started a new countdown so – all together now – TWO DOWN TEN TO GO…..

The Lewis Foundation

Truth told, I was feeling a bit fed up when I turned up for the first of the weekly sessions, but on the day I was properly cheered to receive a sweet gift from The Lewis Foundation – a charity working here in Leicester, Northampton and Kettering to deliver free gifts to people receiving chemotherapy in local hospitals.

Lewis 9B6F8528-28DF-4675-951E-7A1AEB9E3829

Small charities like the Lewis Foundation make such an important difference to people’s daily lives. Like most people, I’ve a lot of time for all of the cancer charities, but the big two (Macmillan and Cancer Research) are the two that crop up most often when you’re in a position to actually donate your hard earned cash. For my own part, I’ll keep on donating to those big charities when the opportunity arises but I’ll also make a point of seeking out these kinds of smaller, up-close-and-personal charities in the future too, because I’ve seen and experienced the very real, personal difference they can and do make.

The nicer side of chemo

I’d be lying if I tried to convince you that chemo was anything other than completely and utterly boring, but there are a couple of up-sides.

Like having a seemingly endless supply of spring flowers to find vessels for….

And the lovely, quirky gifts that make you proper laugh out loud, lift your heart and come to mean the world to you

looking sharp 3FCAECA2-A0A5-4BDD-A407-FC4FC72B1E95

Meanwhile in other news….

Meanwhile in other news, the Brexit shambles shambles along then, doesn’t it?! I understand that some folk glued their bum cheeks to a glass panel in Parliament earlier this evening whilst the MPs were busy trying to make their minds up about how we should next be forced to die of national mortal embarrassment. So, you know, that’s where we’ve got to with that…..

Anyhoo – it was always going to be a short post this evening. I’ve got a strange mixture of chemo brain fog and wordy block going on at the moment but I thought if I forced myself to sit and write through it I might find a way back to more regular posts. I’m not sure if it has worked or not yet. I guess we’ll find out in the next day or so – watch this space!

To finish up, have a song, why don’t you? I’ll bid you farewell and catch you again soon.

Love you lots, like jelly tots,

WeeGee xoxox

*Spoiler alert: I do NOT like it.