Posted in Living with cancer

ONE MORE TO GO

O Hai!

I thought we’d do a quick hair status report before we get started:

Haircut: A smidge off Natalie Portman, circa V for Vendetta.

Eyebrows: Half a dozen each side, multiplying slowly.

Eyelashes: Three. The magic number.

——-

Since last I wrote I have mostly been thinking about 4×4 Porsches. Specifically, I’ve been busy trying to figure out whether people buy Porsche 4x4s because they want a Porsche, or because they want a fancy 4×4. I mean if you’re in a position to be buying ANY fancy 4×4 of your choice you’re going to want a customised Range Rover, aren’t you? And if what you want is a Porsche then surely you’re going to want something a little bit flashy. Showy, even, no? All I’m saying is I don’t know what’s going on in peoples’ heads when they buy Porsche 4x4s. And that’s all I’ve got to say about that. As an aside, I suppose now might be a good time to mention I’m starting to get a bit bored of my sick leave…..

How have you all been anyway? All is well here in WeeGee land. Or at least as well as can be expected when you’re six months into five months worth of chemotherapy. Still, yesterday was chemo number 15 out of 16, which means there’s one more to go! I’m looking forward to being able to tick something off the list at last, but I’m tired and I’m keen not to get ahead of myself. My active treatment won’t finish until at least the end of the year and that means there’s still a long way to go. In my case, the chemotherapy isn’t even the primary treatment – it’s neoadjuvant, literally meaning before the main treatment. My main treatment will be the surgery, and it won’t be until that’s done that we know what we have been and are up against.

two to go
The ‘two more chemos to go’ face

Of course, I’m glad I’m nearly at the end of chemotherapy, but I’m only glad in a small way. It’s that thing about not counting your chickens, I guess….

Six months later

Oddly enough, six months ago today, I was busy having my first chemotherapy session – it feels like a lifetime ago. It was Christmas Eve, and while I don’t exactly know what the opposite of festive is, I think it’s safe to say that’s pretty much what I felt as I walked into the Osborne Building, past the jolly holly Christmas tree in the foyer, and  up to the chemotherapy suite for the first time.

I’m still not entirely sure how I got myself to that first appointment because every single fibre of my being was SCREAMING at me not to go. I was still at the ‘this isn’t really happening’ phase, still more than half convinced that somebody had made a terrible mistake somewhere along the line and still wondering why, if I didn’t feel ill, I had to have the treatment at all. In the end, I suppose I  got myself through that day in the same way as I’ve got myself through pretty much everything – by putting one foot in front of the other until I didn’t need to anymore.

I’m sure there are all kinds of ways to get through chemotherapy. You just go with whatever works for you and for me, it was one foot in front of the other, in front of the other, in front of the other until I got myself here with the finishing line in my sights. It’s been a bumpy old road, that’s for sure.

Six months is a long time to do anything for. After six months, the thing will have smashed a path into your life, established a new set of routines, and settled in for the long haul. After six months it isn’t even a new thing anymore, it’s just a way of life. After six months, that thing that you didn’t want to do with all of your might, is just a standard flavour of normal. After six months you find yourself somehow attached to the thing – to the tedious, repetitive nature of it all, to the cotton wool you’ve been wrapped in, to the rhythms and routines.

All of this is really just to say that I’m still feeling a bit reflective as I near the end of the chemo. Either that, or it’s Stockholm Syndrome….

Ring my bell

As I near the end of chemo, a couple of people have asked me if I’ll be ringing the bell and the short answer to that is no, for a couple of different reasons.

The end of treatment bell is a relatively new concept here in the UK, brought back to Manchester via Oklahoma for a little girl called Emma, who was treated for soft tissue sarcoma back in 2013. Over time, the bells spread out of children’s wards and into adult hospitals and they are now fairly common up and down the UK. The hospital I’m being treated at has an end of treatment bell in the chemo suite, radiotherapy unit, and out-patient clinic.

End-of-treatment-bell

There has been quite a lot of talk in the cancer community recently about the end of treatment bell. This blog post, in particular, caught my attention and has generated quite a lot of conversation online about the impact that the end of treatment bell has on those receiving treatment for cancer that can’t be cured.

For my own part and for what it’s worth, my feeling is that there is perhaps an argument for moving the end of treatment bells away from main treatment areas, but I see less merit in the case for removing them altogether. In the past six months, I have seen countless people ringing the bell in the chemo suite during my treatment, and do you know what? I’ve never seen smiles like it. It always seems to me like a tiny moment of pure joy at the end of a thousand dark days and I can’t make a case for taking that away from those who want it.

As for my own decision not to ring the bell at the end of the next treatment, there are two factors. The first is that for me, the end of chemo doesn’t really mark the end of anything in the true sense of the word. There is, as I keep saying, still a long way to go and I’m not in the business of tempting fate right now. The second is that I’m not exactly mad keen on being the centre of attention at the best of times and ringing a great big bell so everybody turns to stare at me standing there ringing a bell like a giant plum is my idea of FUCKING NIGHTMARE. So you know, no thank you very much…..

Meanwhile, in other news.

Meanwhile, in other news, it is STILL raining here in Harborough, but the good news is, on the box sets front I’ve rocketed through The Good Fight, Chernobyl, Year and Years, The Good Doctor and Sacred Rivers with Simon Reeve. I’m all out now though, suggestions, please?

Nothing else to report today so here endeth the blog post. It’s over and out with a song as usual. This one is more than 20 years old, and if you’re struggling to believe that, well I  guess that can only mean you’re as old as I am.

Love you all lots, like jelly tots,

WeeGee xoxox

Posted in Living with cancer

Leap and a net will appear

Hello there you lovely lot. How’s it all going? I’m sorry I’ve been absent – I’ve been busy having chemo, and writing short stories and passing my creative writing course WITH A DISTINCTION. Go me.

I’ve also been relatively busy despairing about the state of UK politics, but that’s not exactly news, its just what we all do now, isn’t it?

Eyebrow news

Since last I wrote, three whole weeks have passed and, WAIT FOR IT, there is eyebrow related news to report. No less than six of the little beauties had sprouted at the last count, although the situation on the ground is fast changing. It could be as many as EIGHT by now. Okay, so they’re nothing much to write home about just yet, but I’ll take them. Huzzah!

he man giphy
One day soon. One day.

Two more chemos to go

Things have also been going pretty well on the chemo front since we last spoke. Reducing the dose of the paclitaxel worked wonders for the awful pain that I haven’t moaned nearly enough about, but also delivered the happy coincidence of much better liver function test scores. As a result, I managed to have four chemos on the bounce with no breaks in between and, as I write, I have only two more chemo sessions left to go. It  feels both awesome and strange in equal measure.

I haven’t enjoyed chemotherapy. Nobody does, I guess. For the past six weeks, my mantra has become ‘I’ll be glad when this bit is over with’ because weekly chemo is hard going – it’s incessant, and exhausting and so utterly dull. Mostly I’m tired. I’m tired in my bones. I’m tired in my head. I’m tired my heart. When I walk out of the chemo suite in two weeks, I will be glad beyond any measure I can imagine.

I thought I was smiling 7A6DD366-A7DA-42CE-B4FC-F85FAE656331
I honestly thought I was smiling when this picture was taken – I guess this is just the face I pull during chemo now

Truth told, there’s another feeling mixed in with the anticipation of being free from the drudgery of weekly treatment. Fear – I think. Fear of what comes next, of how much longer the path ahead of me actually is, and of course, fear of where that path might lead me to, in the fullness of time. During chemo, I’ve been all wrapped up in the routine of it all, focused on ticking the next treatment off the list, and most of all, cocooned by the amazing NHS. The doctors, nurses, healthcare assistants, and admin staff know me and what my story is. They’re looking out for me, week by week, treatment by treatment, day by day. As difficult as it’s been, I guess I’ve gotten used to chemo. I know how it works, what I’m doing, and how to get through it. What comes next is another huge leap into the dark.

What’s the plan then, Stan?

It’ll be a while before I know what I’m going to have to face up to next. There will be tests at the end of chemo, and decisions to be made about surgery, and then more tests, and more decisions about what to do once the full impact of the chemo and surgery is understood. There will likely be fairly extensive radiotherapy in my future, there might even be further chemo or additional surgery. I always knew I was on a long and uncertain path, and I am still absolutely resolute that I will do whatever it is the experts in charge of my care tell me to do.

So the plan at the moment is this: I get through the next two weeks of chemo, and I celebrate when it’s done. Then I get through the tests and await further instructions from my team. And then, when they say so, I leap.

LeapNet
I’m sorry about the ‘inspirational’ quote but as far as they go, it’s quite a good one.

Meanwhile, in other news.

Meanwhile, in other news, it has been raining here in Harborough FOREVER. Which is most disappointing in some ways, but it does make for some lovely cosy afternoons with the cat, a good book and Cadbury Darkmilk, which I’m eating by the bucketload because Jason Donavan told me to.

rainy days IMG_5234
Happy days. Rainy, but happy

Nothing else from me today, other than to say that I hope this post doesn’t seem too miserable. I’m perhaps feeling a little reflective as I approach the end of chemo, but I’m in good spirits nonetheless, and my chin is very firmly up.

I’ll leave you with a song as usual. I think we just have to accept the fact that all of the songs are going to be old now because, well, I is old and new music mostly baffles me.

Love you all lots like jelly tots,

WeeGee xoxox

Posted in Living with cancer

This cat has got better eyebrows than me…

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

Posted in Living with cancer

I’m still standing

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!

source
Yeah, yeah, yeah…

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.

Posted in Living with cancer

A bit of a disaster

The last time we spoke I was busy boasting about how it had been plain sailing weather here in WeeGee land for three whole days. In the end, I think I got about a week of calm before I hit choppy waters again which I suppose is better than if I hadn’t got a week of calm at all.

To be quite honest with you, it was a lot like Frank Turner’s mohawk in Fathers Day – that is, a bit of a disaster.

As an aside, I’ve wanted to share that song with you for AGES and I’m sure you’ll agree that I haven’t shoe-horned it in at all.

As usual I’ll do away with the long, boring details and put it in a nutshell for you – when I turned up for chemo on Friday with pins and needles (which had been previously deemed ‘just a side effect of the paclitaxel’) and a swollen arm (which had been previously deemed ‘just an allergic reaction to the PICC line dressing’) ALL HELL BROKE LOOSE. Turns out it wasn’t a chemo side effect, or an allergic reaction at all. No! It was that blood clot I didn’t have a couple of weeks ago but actually quite probably did have all along. Fan Dabbie Dozzie…..

Blot clots (or deep vein thrombosis – DVT) are an occupational hazard for cancer patients. The fact of your cancer puts you at increased risk of developing them, and then the way chemotherapy drugs interact with your blood increase your risk slightly further, and then if you have PICC line – as plenty of chemo patients do – you get another layer of risk on top of that. When I think of it now it seems INEVITABLE that I was going to develop one!

PUBLIC SERVICE BROADCASTING ANNOUNCEMENT

There’s a more medical run down of blood clots on the NHS website if you want to check it out because, and this is important boys and girls – blood clots are not just for cancer patients. In the meantime, if you get any of the following:

  • throbbing or cramping pain, swelling, redness and warmth in a leg or arm
  • sudden breathlessness, sharp chest pain (may be worse when you breathe in) and a cough or coughing up blood

You need to seek medical advice pretty sharpish (in the UK by dialling 111).

END OF PUBLIC SERVICE BROADCASTING ANNOUNCEMENT

I was lucky. A very vigilant nurse decided that she wasn’t happy to accept the previous diagnosis and sought a second opinion from a doctor who also wasn’t happy to leave things as they were. So off I went for an ultrasound which detected a nasty little clot hiding out right next to the PICC line site. It’s impossible to know whether the clot was there when I was examined last week or whether it had developed since and at this stage, I don’t suppose it matters. The main thing is it was spotted and we’re now treating it with daily injections which I’d rather not talk about thank you very much because TRAUMA.

Alas, the dramatic interlude did not put paid to my weekly dose of Paclitaxel which I ended up having via an old fashioned cannula because the PICC line, which I resisted, and slated and hated with all my might (but secretly came to love) is GONE. As soon as the clot was confirmed they whipped that out in seconds flat, and I do really mean that they whipped it out in seconds flat. Which is all I’ve got to say about that because TRAUMA.

DNUse C78D457C-F5B1-4086-B2E4-FAD29B8CA553
DO NOT USE

We’ll wait to see how my veins cope with the Carbo/Taxol chemo and weekly blood tests. The thinking at present is that we’ll give it a go for the next two weeks, see what happens and then consider an alternative plan of action if the veins are starting to put up a fight. The Carbo/Taxol chemo is ALLEGEDLY kinder and gentler than the EC chemo that caused my veins so much grief earlier in the year but between you and I, I’m not altogether convinced they are up to it, particularly given we’ve only got the non-clotted arm to play with. Time will tell I guess…..

By the time all was said and done we were on the chemo suite for a full eight hours yesterday, rather than the two hours we’d budgeted for. The day was made slightly better than it could have been with a visit from a LOVELY former patient who had held a bake-off event with her friends so she could put together little gifts for everyone on the suite. It was such a genuinely gorgeous gesture and yet another reminder – as if I needed one really – that people in general, are generally nice.

Gift A5CEB013-7995-4ED5-9DB6-32E1C373F216

It was a long and frustrating day and by the time we got home I was completely, utterly and well and truly wrung out. I made it as far as 8pm before the steroids wore off and it all caught up with me, manifesting in what shall henceforth be known as the Marks and Spencer’s Chocolate Cake Incident. But I’m not ready to talk about that yet, because – you guessed it – TRAUMA.

So, yeah. That’s the story of the blood clot I didn’t have last week but probably did have all along and the rather unceremonious end to the much-maligned-but-not-as-bad-as-all -that PICC line. The fun never stops….

Meanwhile in other news I am continuing to sprout an impressive little fuzz of hair on my head but alas, the eyebrows are not yet ready to return. Nothing else to report today save that I hope you are well and that those of you in the UK are coping with the ravages of Storm Hannah. Stay strong…..

Look – I know we’ve already had a song but it’s tradition to have one at the end. So here is a song. At the end.

Love you all lots, like all the jelly tots

WeeGee xoxox

 

 

 

 

 

 

 

 

 

Posted in Living with cancer

Looks like my hardcore rock and roll days are behind me, folks….

Since last I wrote things haven’t exactly been going to plan but let’s face it – things not exactly going to plan is hardly even news here in WeeGee land anymore.

According to plan CtoPfuaWYAA1Jdg
Much like my life at the moment, this cake didn’t exactly go according to plan

The long and the short of it is that these was no chemo for me again last week, but that everything’s back on track again now and as of Friday, I’ve started with the Carbo/Taxol combo again. There was the small matter of the COMPETELY UNNECESSARY mad dash to the hospital with a swollen arm somewhere in the middle of it all but we can put that down to an over cautious district nurse and NEVER SPEAK OF IT AGAIN.

Anyway, once the Registrar had given me the all clear to take myself and my only very slightly swollen arm home TEN MINUTES after arriving (don’t mention the FORTY MINUTE journey there) I found myself in Leicester on a sunny Wednesday afternoon. I decided to have a poke around some of the city’s cultural offerings so at least the whole trip wasn’t a complete waste of time.

IDay at the museum MG_4506
New Street Museum and Art Gallery, Leicester.

In the end I had a three-week break from chemo and truth told, it was pretty frustrating at times. I’d just gotten my head around the whole weekly chemo thing only to have it postponed two weeks running. Even now, more than four months on from the diagnosis, I still feel like I spend half my time waiting for my brain to catch up with the reality of what’s going on around me. In the space before chemo got going again I found my thoughts racing ahead of me, focusing on the next steps – the surgery, the radiation therapy, life post treatment. It was exactly what I’d promised myself I wouldn’t do: this fight is very much about looking at what’s directly in front of me and dealing with it, but I had spare brain capacity and time on my hands. Thankfully Mr Awesome Thing Number Five noticed the doomy gloomies starting to gather (again), and with a little help from my nearest and dearest, made sure I got out and about in good company, with my chin firmly up once more.

I can’t claim the break was all bad news because – and here’s the thing – I probably really needed it. I was well and truly whacked from the infection debacle that landed me in ward 39 a couple of weekends back and I needed to rest. By the end of the fortnight off I felt better than I had for a very long time. It’s a strange thing – chemo. You can never quite be sure whether you’re feeling chemo shitty, or, just plain old fashioned shitty. On reflection I think the infection may have taken a little more out of me than I had first thought and a lot of what’s been going on recently has been shitty of the plain old fashioned variety. In all honesty I’m maybe a little bit glad I got the extra time to recover. As I write, pretty much 24 hours after the chemo I’m feeling tip top, and I reckon only about half of that is the rather hefty dose of steroids I took this morning.

The arrival of some good solid sunshine here in the UK is very welcome indeed especially arriving, as it did, just in time for the long Easter weekend. My Easter didn’t exactly get off to the most festive of starts what with spending Good Friday in the chemo suite getting five hours worth of poison pumped into my veins and all but hey ho – at least I got a window seat and a table to unpack my little picnic this time round:

I can’t remember if I’ve written about the process of getting IV chemotherapy before perhaps because there isn’t all that much to say. It’s pretty boring, and pretty routine and the ward can be pretty solemn. I think everyone is mindful that everyone else is doing their own best to get through what they are going through in their own way. I guess you find that you go out of your way to be quiet and respectful. From time to time you strike up conversations but you really have to gauge it quite carefully so as not to trample all over somebody else’s coping strategy. Aside from that my top tips for chemo are quite straightforward– take a book or something to occupy you, headphones and snacks. Then all you’ve got to do is lie back and think of Scotland* – it really isn’t as bad as you think it’s going to be. If it wasn’t for the combination of pre med antihistamines and the alcohol content of the actual chemo drugs you’d probably be quite capable of driving yourself home afterwards….

Now the weekly chemo is done with I’ve got a fairly pedestrian Easter weekend planned, even though I feel completely fine. I mean, there’s no need for heroics here, is there? In view of the liver scores a couple of weeks ago I’ve been instructed to lay off the drugs, alcohol and rock and roll lifestyle INDEFINITELY. In years gone by that might have scuppered a perfectly acceptable Saturday night. Alas – times have changed and all I ever really had my eye on for tonight was a nice glass of Robinson’s summer fruits, a couple of ibuprofen and the second ‘Fantastic Beasts’ film on the telly box. I don’t know if it’s a chemo thing, or a nearly forty thing but I don’t mind either way. The rest of the weekend has been given over to sitting in the garden (with a generous slathering of factor 50 like all good chemo patients), writing, reading and polishing up a cool brass planter I picked up in an antiques shop a while back. Who knows, I might push the boat out and do a bit of weeding in my newly acquired garden – time will tell.

Better view 9F0285E0-5583-4546-8E4E-96F617096290
A slightly better view than yesterday

I think that’s all from me folks. It pretty much brings you up to date with the goings on here in WeeGee land, which granted aren’t exactly laugh a minute. What can I say – thanks for sticking with me! I’ve got all kinds of more entertaining posts planned, but I like to make sure we’re all up to date on the serious stuff before we get on to the fun stuff again.

Speaking of fun, the creative writing course I mentioned in my last post started on Monday and seems to be shaping up quite nicely so far. Over the next ten weeks I’ll be publishing the various snippets of creative writing that I put together during the course here, if anyone is particularly interested in reading them….

I’ll sign out with a song and bid you farewell.

Speak soon!

Love you all lots like Jelly Tots,

WeeGee xoxox

 

*Other nations are available

Posted in Living with cancer

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

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.

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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

Posted in Living with cancer

The week that was(n’t quite)

Since last I wrote I have mostly been hanging out at Leicester Royal Infirmary swearing at strangers whilst wearing precisely fifty percent of my underwear. What? It’s not as if anybody said I’d have to give up on my edgy persona or rock and roll lifestyle just because I went and got cancer, did they?

ace of spades
I’m rock and roll, me.

Side-effect bingo

On the face of it, the fourth cycle of chemotherapy went off without incident. I’m pleased to report that the PICC line would have made things slightly easier had the blasted thing not required cleaning before it could be used to actually deliver chemo. I don’t know what to tell you about getting your PICC line cleaned for the first time other than to say  it looked all set to be the most painful thing to happen to me this week until two slightly more painful things came along and happened…. That’s how we’re measuring things out this week, by the way, on a scale of ouch to FUCK YOU.

Anyway, once I’d got the initial chemo-hangover out of the way, I settled myself in for a nice game of chemo side-effect bingo. I didn’t quite manage a full house this time around, but I did get the nausea, fatigue, sore feet, mouth ulcers, and Extraordinary Wind ALL AT THE SAME TIME* so that was something.

Breathing is over-rated anyway

One of the things I’ve discovered about chemotherapy is that the range of weird and wonderful things that happen to you and your body in view of it is pretty much never ending.

During cycle one I was ALL OVER IT. I monitored everything, and dutifully recorded it in WeeGee’s Chemo Notebook. I also spent a lot of time panicking: everything that happened to me during the first cycle – from the sickness to the weird itchy eyebrows  – felt like a certain sign of impending doom and so I paid attention to it. But we’re at cycle number four now – I’m pretty much an old pro and nothing particularly surprises me any more. And so, when it came to pass that I couldn’t exactly breathe on Tuesday evening, I thought “well blow me, this is new. That’ll be the chemo then….. I’ll just wait and see how I feel in the morning” and took myself to bed.

Anyway, let’s skip the boring bit and cut a long story short: it turns out that not only are you supposed to be able to breathe comfortably when you’re on chemo, it is actively encouraged. And that’s sorta the story of how I came to spend the day in Accident and Emergency on Wednesday…..

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OH NO!

To be honest, the less said about Wednesday the better because it was rubbish. In the end, it was a minor drama about nothing much – no blood clots, or heart attacks or collapsed lungs. It took seven hours, two incredibly traumatic blood tests, the CT scan from hell**, at least a million ECGs and a hundred million people poking and prodding me, to confirm that it was just a mild infection with a touch of heartburn from the steroids thrown in for good measure. But it served as a reminder, to me at least, that this is serious: I am, whether I like it or not, more fragile and vulnerable than once I was and I have to make some adjustments for that. I can’t just keep keeping on regardless. Every once in a while I’m going to have to slow down – perhaps even stop – to give myself a chance to catch up with myself. Which is exactly what I’ve been doing since we got home on Wednesday.

God bless the NHS***

While we’re sort of on the subject, now seems as good a time as any for a mahoosive shout out to the NHS.

I’ve spent a lot of time in NHS hospitals since last December and I have nothing but good things to say about the doctors, nurses and other staff who have looked after me so far. If you’ve stepped foot inside an NHS hospital recently, you’ll be under no illusions that there is some woeful underfunding going on but still the standard of care is world class.

Seriously – the NHS is bloody amazing. And that’s all I’ve got to say about that.

Meanwhile in other news

Meanwhile in other news and in celebration of this week finally being over and done with I’ve MADE A WHOLE POT OF TEA ALL TO MYSELF, and I don’t intend moving from my spot on the sofa for quite a long time…..

Told you I was rock and roll….

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Nothing else from me today, save that I hope you’re all having a smashing Sunday. I’ll sing you out with a little tune I haven’t heard for a while:

Love you all lots like jelly tots, WeeGee xoxo

 

 

 

*Man, it was laugh a minute here in WeeGee Land that day.

** So traumatic, in fact, that I swore quite a lot and then flat refused to put my bra back on when it was done. Because REBEL.

***Other deities are available