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!

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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.

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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.

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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….

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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.

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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….

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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!

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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.

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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.

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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:

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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

I’ve started so I’ll finish

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?

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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

Posted in Living with cancer

The one about triple negative breast cancer

Hello there you lovely lot. How on earth have you all been?

There’s not an awful lot I can tell you about the past week here in WeeGee land. I mean, it’s been pretty boring. I got my head around the whole blood clot thing, dragged myself through the post-taxol side effects, and survived my first blood test since the demise of the PICC line. And that, as they say, is that.

Or at least that should have been that. Sadly, there’s a small matter of some sub-par blood results and the yet-again-postponed-chemo to throw into the mix but I’ve decided I’m just going to go ahead and be philosophical about that. I’ll get chemo when my body is good and ready to get chemo and in the meantime, there’s a bank holiday weekend without any post-taxol side effects to look forward to.

The good news is not having any chemo today has also given me a bit of extra time to write a post I’ve been meaning to write for a little while now. So, ladies and gentleman, I give you….. the one about triple negative breast cancer (TNBC). Huzzah!

Screen Shot 2015-09-24 at 15.36.28_646x363

Before I start though, I want to sound a huge note of caution: if you are diagnosed with TNBC please (please, please, and pretty please) don’t Google it unless and until you have discussed the diagnosis with your team. TNBC is often portrayed as the Bogeyman of breast cancer, particularly in the popular press where the available word count doesn’t necessarily lend itself to subtleties or nuance in cancer reporting. The best advice I can give someone with a recent TNBC diagnosis is to listen to your doctors and take some time to understand what they’ve said before you head off to explore the quagmire that is the Internet unaccompanied. 

———-

Before this whole thing kicked off I hadn’t even heard of the thing that was going to come along and change my life forever. In fact, prior to my diagnosis, I didn’t fully appreciate that there were different types of breast cancer at all. So, when I first heard the words ‘triple negative breast cancer’ they barely registered. I heard the breast cancer bit loud and clear, but the other bit? Yeah, that sailed right over my head.

Less than a week later I was waiting to meet with my consultant oncologist for the first time. My appointment was at 7pm and I was the only person in the waiting room. Thinking back, I suppose it should have struck me as unusual that I was sitting there waiting to see a NHS consultant at 7 o’clock in the evening, just a few days after my diagnosis but at that point in my breast cancer journey my brain was completely fried and everything felt unusual. It was only as the appointment unfolded that I started to get a sense of the urgency that surrounded my recent diagnosis.

What even is triple negative breast cancer?

I’m not even going to try and explain the science here – others like Macmillan and Cancer Research have already got that covered – but in layman’s terms, in order to grow some breast cancers respond to a protein called HER2, some respond to oestrogen, and some respond to progesterone. And then there’s triple negative breast cancer (TNBC), which responds to none of the above.

TNBC accounts for between 15 and 20 percent of breast cancers and, in contrast to other types of breast cancer, comparatively little is known about why some women develop it. It doesn’t share the common risk factors for breast cancer, and for most women with the disease there is no genetic component* TNBC is more likely to affect women under the age of 40 and black women are also disproportionately affected by the disease.

Cat IMG_2493
It’s all getting a bit serious, so here is a picture of my cat.

What’s the big deal?

TNBC is often described as the most aggressive form of breast cancer, because it tends to be fast growing. More often than not, TNBC will be diagnosed as ‘grade three’ meaning it is made up of the fastest growing cancer cells of all. Because it is fast growing, TNBC also has a habit of spreading to other areas of the body meaning that the number of women with TNBC who are diagnosed with, or go on to develop a metastatic form of the disease (that is stage four, incurable cancer) is higher than those with other types of breast cancer. The fact that it is both fast growing and quick to spread also mean that comparative with other types of breast cancer, it is more likely to recur within the first three years. This recurrence risk has a knock on effect on survival rates which are measured over five years in the first instance.

That’s the bad news, but it isn’t all doom and gloom. For one thing, TNBC responds well to conventional treatments, like chemotherapy and surgery. For another, although the odds of recurrence are comparatively high that’s only true in the three years immediately following diagnosis. After that, there is no elevated risk of developing breast cancer again at all. And then – and this is the most important thing for me – notwithstanding any of the above, the overall survival rate for women with TNBC is almost eight in ten. It may not be the 93 percent for protein and hormone positive cancers, but it’s still a fairly sizeable majority – a fact that is all too often missing from the literature on the subject.

TNBC and me

Whichever way you look at it, TNBC is a nasty little disease and, given its propensity for growing and spreading, one that requires super fast treatment. Which is why, after my diagnosis had been confirmed, I was sitting in an oncologists office within a week, and a chemotherapy suite within a fortnight. Without wishing to put too fine a point on it, you just don’t fuck about when it comes to TNBC.

My cancer is not, in triple negative terms, particularly aggressive – grade two which is exactly in the middle of the three point scale. Unfortunately, some lymph note involvement was confirmed at the time of my initial diagnosis, or to put it another way, breast cancer cells were detected in the lymph nodes in my armpit. This isn’t ideal as it’s via the lymphatic system that cancer comes to move around the body and metastasise, or grow in secondary areas of the body. At the same time, it isn’t the end of the world because there is no evidence whatsoever that the cancer actually has travelled beyond the lymphatic system.

Even in the event that there were microscopic cancer cells swimming around undetected last December, the chemotherapy will have knocked the stuffing right out of them before they had the chance to take root and start growing anywhere else. And this means that by the time I’ve had my surgery and radiotherapy later in the year, the anticipation, expectation and hope is that there will be no evidence of cancer left anywhere in my body because I will be *whispers it* cured. That’s the plan and I am very definitely sticking to it…..

Me, he and the cat IMG_2573
Getting serious again, so here is a picture of me, he, and the cat.

Before I go, I wanted to come back to the point about TNBC being the Bogeyman of the breast cancer world. It may well have earned its reputation because, as I’ve said, it’s aggressive, quick to spread and eager to recur. But here’s the thing, the most important thing of all perhaps: the majority of women with TNBC will recover and go on to live the rest of their lives untroubled by the disease. I’ve been thinking about it a lot lately and I just don’t think we make enough of that fact. When we talk about TNBC we get all serious and gloomy and ashen faced. But – and I cannot stress this enough so I’m going to risk repeating myself, the majority of women with triple negative breast cancer recover and live the rest of their lives untroubled by the disease.

Pass it on.

—–

Quick song before I dash, to get your bank holiday started like:

Love you all lots, like jelly tots

WeeGee xoxoxo

 

*As an aside, a small number of women with TNBC carry the BRCA1 (another thing I’m not going to attempt the science on – see here). At the time of my diagnosis I wasn’t recommended for genetic testing, primarily because I don’t have any sisters. Now I’m a bit more comfortable advocating for myself I’ve decided to push for it to happen so it can inform my decisions about surgery and radiotherapy in a few months time. But that’s another story.

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.

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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.

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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

We’re going to need a bigger boat

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.

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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…..

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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

 

 

 

 

 

 

Posted in About today, Living with cancer

Nobody mention the PICC line….

Since last I wrote I have mostly been busy trying to keep my mind off two sore arms and one minor setback. Settle in and I’ll explain….

The first thing you need to know is that I’ve got really tiny veins. And I’m not just saying that to show off. Every time I meet someone who is tasked with getting a blood sample from me*, I have to open with “Oh hai! I’m WeeGee and I’ve got really, really (really) tiny veins” and then they don’t believe me until they actually SEE the veins at which point there’s usually a small sigh before the hunt for a teeny tiny needle begins…..

Here’s the thing though. If you start pumping really powerful, corrosive chemotherapy chemicals through really really (really) tiny veins at three weekly intervals, it turns out they get damaged and start to grumble about it. The veins in my left arm started complaining after chemo round one, then the right arm joined in after round two and by round three they were both screaming and shouting about it like bloody loonies. I’m making light of it a bit, but between you and I it’s not actually funny at all. As things stand, both of my arms hurt like buggery and the left one doesn’t exactly work. I’m assured this is a known side effect of the chemo I’m on, if not exactly one of the more common ones. But hey – at least it can’t be said that there’s anything common about WeeGee……

Anyway – to solve all of this, the oncologist decided we’d give up on the really, really (really) tiny veins and insert a PICC line so we can go straight for the heavy duty veins. The hope is that if we go for the big guns, they might not complain about the toxic chemicals quite so much but unfortunately, to get the PICC line in, we’ve had to delay the next round of chemotherapy by FOUR WHOLE DAYS. And that’s the story of how I came to be sitting here chatting with you today, instead of getting my fourth round of chemotherapy done as planned…..

I’m not over the moon that my treatment has been delayed. For me, the fourth round of chemotherapy marks the half way point and that had come to matter an awful lot to me in recent weeks. I kept thinking that by the time I got the fourth one out of the way, I’d have have climbed all the way up to the top of the mountain and would soon be on my way back down the other side. Halfway is a milestone – it’s progress of sorts – it’s something I can tick off the list. I know it’s only four days, and I know it could be a whole lot worse but the HALFWAY point mattered and I’m annoyed that we’re not doing it today. I was all set to smash my way through it.

On reflection, chemotherapy so far has felt  like a series of right decisions I wish I hadn’t had to make – the PICC line is just another of those. Of course I don’t want a permanent, visible reminder of what’s going on with my health attached to my body. Of course I don’t want to be faffing about with a district nurses in and out of the house all the time because, I mean, DO THEY THINK I AM ILL OR SOMETHING? And of course I don’t want something as simple as jumping in the shower becoming a military-fucking-operation. But – and this is an important factor to consider – I’d also quite like to have a pair of working arms when I get better. That’s what I got to choose from – the PICC line, or lifelong mobility issues. In the end, I brooded about it for a day or two, did a bit of swearing in my head and then I got over myself, sucked it up and moved on because what else are you supposed to do anyway? Just don’t mention the PICC line and we’ll be absolutely fine…..

Meanwhile in other news, the sun came out over Market Harborough this weekend. I know that climate wise it isn’t exactly great news that we’re all walking about in t-shirts in February but I do like the sunshine, and I do like the spring. I made a point of getting myself out and about in it because who knows how long it will last, or how many more weekends like that we’ll see this year? I was lucky that the sunshine fell on my third weekend and I was determined to make the most of it with a fairly decent walk in the Northamptonshire countryside. The fresh air and exercise did me the world of good and if I was tucked up in bed by 9pm as a result then it was absolutely worth it….

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Weekend sunshine

That’s all from me for today so I’ll leave you with a bit of a song for you to sing along to and bid you farewell.

Love you lots like jelly tots, WeeGee xoxox

 

 

 

 

 

*There are LOADS of them, recently

**They were every bit as bad as all that.

 

Posted in About today, Living with cancer

Look Good Feel Better

Since last I wrote I have mostly been busy trying to compile a list of All The Perks Of Having Chemotherapy.

I’m not going to lie – it’s a short list……

All of the Perks of Having Chemotherapy: a handy list

  1. First there’s naps: naps go to the top of the list because when you are having chemo you’re actively encouraged to take LOADS of them AND nobody  gets to call you a lazy so-and-so when you take to your bed at three o’clock in the afternoon.
  2. Then there’s ice-cream: turns out, if you feel sick and ill all day and then suddenly decide you fancy some ice-cream you’ll have no trouble convincing someone to go to the shop to buy ALL OF THE ICE-CREAM for you.
  3. You don’t need to get your hair cut for AGES.
  4. If, like me, you’ve got a cat you’ll probably be able to get yourself out of litter tray duty on account of all the germs and that – although to be honest, the more I think about this one, the more I think it might be less of a perk and more of a simple re-distribution of domestic duties…..
  5. If you have psoriasis chemotherapy pretty much cures it in one dose and less than 48 hours
  6. You have to go to some lengths for this one but if you can manage to end up with compromised veins you can legitimately refuse to do any hoovering, potentially for the whole rest of foreverbecause – and I believe this is the correct medical term – your arm is fucked*
  7. If you are super lucky, you’ll manage to bag yourself a place on a Look Good Feel Better Workshop
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One of the many ice-creams I have eaten and enjoyed….

Look Good Feel Better (LGFB)

Look Good Feel Better is an international charity working to boost the physical and emotional well being of men, women and young adults undergoing cancer treatment. The focus of their work is helping people to better cope with the more visible side effects of cancer treatment.

What LGFB do

LGFB run workshops at more than 100 hospitals in the UK. The workshops give people undergoing cancer treatment the opportunity to spend time together chatting, drinking tea and sampling skin-care and make-up products. The workshops are led by professionals who guide you through all kinds of important subjects like making the most of your chemo complexion, and re-drawing your eyebrows.

As well as the workshops, there are a whole load of online tutorials on their website. There’s also the ‘confidence kit‘ which you can get hold of via their website and is full of tips and tricks.

My experience of LGFB

My breast care nurse told me about LGFB the  day I was diagnosed with breast cancer. She told me it was a pampering session, that I’d get a little goody bag of cosmetics to try and that it really helped people feel better about their treatment. She gave me a leaflet about it and, I suspect noting the distant how-the-fuck-can-this-be-happening, I’m-not-actually-taking-any-of-this-in look in my eye, wrote “THIS IS IMPORTANT” on the front.

I had to wait a little while for a spot on one of the workshops as they tend to be oversubscribed but I eventually rocked up to the Macmillan Advice Centre at the Leicester Royal Infirmary at 10am this morning, very much looking forward to the session.

There were seven other women at the workshop and every single one of them was amazing. I don’t suppose we had very much in common really, apart from the obvious – we were all ages, all walks of lives, different ethnicities and we’d come from at least three different counties: whenever I find myself in a group of people with cancer, I do find there is a very visual reminder that cancer doesn’t discriminate. This morning as different as we were, we were united – we were united by our diagnosis, our experiences, our eyebrow anxiety, our fear of the future, our fondness for one particular chemo nurse…..

The session was led by three make-up artists. They were super knowledgeable, really friendly and incredibly kind. They created a  safe and supportive environment and made an excellent cup of tea at half time. The goody bag was fairly substantial, with some recognisable brands in mostly neutral, useable colours.

Free stuff
LGFB Goody bag

I enjoyed the worksop – my eyebrows looked better when I left than when I arrived and from here on in I will be a tad bolder with my eyeliner. More than that though, I enjoyed spending time with the other women. I loved hearing their stories, I loved being in their company, and I loved having a very real reminder that I am not alone in this – there are so very many people in the same boat, sailing along with me.

Why LGFB matters

Coming to terms with a cancer diagnosis is difficult. It’s a confusing and frightening time, and more often than not, the treatment gets underway before the patient has even started to process what’s happening or what it means.

In my experience, you find yourself catapulted into something that you’re not ready for, and that you couldn’t stop even if you wanted to. Your head is all over the place and then, before you know it and on top of everything else there’s a stranger looking back at you in the mirror, and you feel very different even though you know you are sitting there in your own skin. I’ve had days where I’ve wondered if I could face leaving the house because I didn’t feel or look like myself. I’ve had days where I’ve had to really psych myself up to get over the door because I felt so sick of facing the world looking like a cancer patient.

Getting through cancer treatment is as much about what’s going on in your head as it is about coping with the physical aspects of the treatment. LGFB helps you to get and keep your head on straight – it’s a tiny dose of confidence, a little boost of self esteem, and two hours of not thinking about anything other than how fabulous you look.

How you can help

LGFB is a charity, and as such, welcome donations and fundraisers. If you are looking to help people with cancer, LGFB is an excellent cause – they make a small but very real and important difference to the experience people undergoing cancer treatment have. More information about fundraising for LGFB is published on their website.

If marathons and tough mudders aren’t your thing, but makeup is you might also consider investing in some LGFB makeup brushes. I can personally testify as to to the quality and can’t think of a much easier way to support a great charity…..

Meanwhile in other news

Meanwhile in other news this time next week I will be exactly half way through the chemotherapy leg of the treatment which feels like a very important milestone indeed…..

As usual, we’re winding up with a song because that’s what we do, and because routines are important. It’s another old one I’m afraid, but that, I guess, is what happens when you get old…..

Love you lots like jelly tots,

WeeGee xoxoxox

 

*I don’t actually recommend doing this

 

Posted in About today, Living with cancer

Some of the important things I have learned about chemotherapy (so far)

Afternoon all – Quick warning to begin with in case you’d prefer to sit this one out – there’s a picture of a needle in this post, and another of me hooked up to a machine via a cannula. No blood or guts or anything, but you know…..

Since last I wrote I have mostly been recovering from my third dose of chemotherapy. This means that I’m either nearly half way through, or just over a third of the way through – the chemo leg of the treatment, depending on which way you’d prefer to look at it. Regardless, it is absolutely compulsory for me to say “three down and five to go” as cheerfully as I can at this point so, you know, THREE DOWN AND FIVE TO GO……

Cycle 3 car
Our ‘three down, five to go’ faces

Before I started having chemotherapy I hadn’t spent much time thinking about chemotherapy. I mean, I must have thought about it in that casual, passing sense that you think about all kinds of things that you hope will never come to mean anything to you, but I’d never turned my attention to actually, properly thinking about what it was all about. I knew chemotherapy was used to treat cancer, I knew that it made you feel crappy, and I knew it made you lose your hair. The fact that only two of those three things are strictly true is, I guess, a pretty good indication of how little I knew about chemotherapy two months ago….

Here are just some of the things I have learned about chemotherapy so far…..

HOLD THE FRONT PAGE: Chemotherapy isn’t just one thing.

Either this will come as news to you and you’ll be (at best mildly) interested, or you knew it all along and you’ll be left wondering what kind of idiot is in charge here, but one of the first things I learned about chemotherapy is that it isn’t just one catch all thing that they dole out to anyone with a cancer diagnosis. It’s loads of different chemical treatments, used at different times, in different ways, for different things*.

When I thought about chemotherapy before, I guess I pictured poorly looking people hooked up to drips for hours and hours at a time, and in some cases I guess that’s how it goes. But sometimes chemotherapy can be given as tablets or as injections and some intravenous treatments take as little as an hour to deliver. Sometimes chemo is given daily, sometimes weekly, and sometimes at monthly or other intervals. The side effects vary from treatment to treatment and – this is something that perhaps not many people appreciate – not all types of chemotherapy cause hair loss.

For my part, I’m having neo-adjuvant chemotherapy once every 21 days. I’m given a cocktail of drugs** which are particularly effective in stopping breast cancer from growing and spreading. Unfortunately, I do get hooked up to a drip but (for at least the first four doses anyway) the whole thing takes an hour at most and I’m home before I’ve had the chance to wonder what all the fuss was about.

Plugged in baby
Plugged in, baby.

As things stand all of the chemotherapy drugs used to treat breast cancer cause hair loss so I’ve sucked that one up. That said, some NHS trusts offer the use of a ‘cold cap’ which can ether reduce the rate of hair loss or, if you’re lucky, stop it all together. I’ll write more about my decision to give the cold cap a particularly wide berth at some other time but to cut a long story short it just wasn’t for me….

You have to do some of it yourself

One of the things about chemotherapy that I found most surprising was the number of drugs I was given to take in the week after receiving the actual chemo. It had just never occurred to me that there would be more drugs to remember to take at home after the main event. And the less said about the “easy peasy” daily injection the better…..

Takeaway
The chemo takeaway
Injection
You want me to put it WHERE?!

Chemotherapy isn’t nearly as bad as I thought it would be. Apart from when it is.

Before I started chemotherapy I was prepared for it to be the WORST THING THAT HAD EVER HAPPENED to me bar none. I was convinced that I would be constantly sick and ill, that I would get all of the side effects at the same time, that I’d be pretty much bed bound and that I would be generally and thoroughly miserable. In the end, and for most of the time, none of my worst fears have materialised….

I do feel pretty under par for around four or five days out of every 21 but by and large the side effects, when the have turned up, have so far been reasonably mild and just about manageable. APART FROM WHEN THEY HAVEN’T BEEN MILD OR MANAGEABLE…

I’d guestimate that there have been maybe a dozen hours in each cycle so far where the whole chemo thing has been every bit as bad as I thought it might be – where I thought my head would actually explode from the pain, where I was convinced that my legs couldn’t carry my weight for a second longer, where my skin was crawling off my bones, and I was colder (or interchangeably hotter) than I’d ever been before. Where I’d have sold my granny in a heartbeat if I thought it’d make the waves of sickness stop.

Make it stop

But those dozen or so hours have passed, and as they have passed I’ve forgotten they happened in the first place. I guess when I look at the whole thing in the round I’d say sometimes it’s been totally fucking terrible but most of the time it’s been just about okay.

Before my first chemo dose, the deputy sister*** looked at me, and then looked at my charts and said “it’s going to be fine – you’ll walk this” and I solemnly resolved I was going to hold her to her optimistic promise. And whilst it wouldn’t be true to say this has been a walk in the park thus far, I think overall her assessment was closer to the mark than my THIS IS GOING TO BE THE WORST THING THAT HAS EVER HAPPENED TO ME take on things.

So hats off to her, I guess, and long may it continue.

There’s tired and then there’s chemo tired.

Before I started the treatment everyone was at pains to tell me about how tired I’d be.

“Chemotherapy will make you feel very tired” they said and I was all “yip, yip, tired, yip got that, yip”.

Here’s the thing – no matter how tired they told me I was going to be, or how much I thought I understood what being tired was all about – there was nothing that could have prepared me for how tired I sometimes am.

Tired

Chemo tired is like a double turbo charged kind of tired, the likes of which I had never imagined before in my life. It hits you quite suddenly, and demands that you stop and rest IMMEDIATELY whether it is altogether convenient or not. Sometimes I find myself wondering if I’ll be able to make it to both the supermarket and the chemist in one trip. Other times I wonder if I’ll make it up the stairs and back down again. And then there are the times I don’t have the energy to wonder at all and I send Mr Awesome Thing Number Five on whatever errand is required….

There’s a reason they call them cycles

 I have chemo every 21 days because the cells that are actively dividing on day one will not be the same cells that are actively dividing 21 days later. You have to switch it around, you see, so you catch each and every one of the pesky little buggers in the act and then blast them to kingdom come. This is a cycle and by the time I’m done I’ll have had eight of them****

During those 21 days EVERYTHING repeats itself in exactly the same way, at the same time, in a perfect cycle. That’s why they call it a cycle I guess.

  • Day one: I get the chemo and then five hours later I start to feel like death made lukewarm. I spend a restless night concentrating very, very hard on not being sick
  • Days two and three: I have a mild chemo hangover but by and large I am surprised by how okay I feel. I tend to fall asleep every time I sit down
  • Days four – seven: I AM NOT WELL AND THIS IS CRAP AND I HAVE HAD ENOUGH OF THIS AND I’D PREFER IT IF WE DIDN’T DO ANY MORE CHEMOTHERAPY THANKS VERY MUCH.
  • Days eight to 11 – The steroids really start to kick in. I want to eat all of the things and I am prone to crying if I cannot eat all the things
  • Days 11-14 – The steroids start to wear off and I become simultaneously less hangry and more reasonable.
  • Days 14-21: Chemo is a dim and distant memory for the most part but I can’t promise I won’t need a nap in the afternoon.

And then the whole thing starts all over again.

They don’t mention all of the side effects

Sure, they’ll tell you about the side effects that might kill you because – you know – you need to REALLY watch out for those. And yeah, they’ll tell you about the side effects that you won’t be able to miss like your hair falling out, or being so tired you need a nap after putting your socks on. But there’s a whole load of other side effects they don’t mention, I guess because they don’t happen to everyone, or maybe because in the main scheme of things, you probably don’t need to know in advance.

Look, all I’m saying is that nobody told me my nose hairs were going to fall out, or AND THIS IS THE CRUCIAL BIT that when they did, if I pinched my nostrils together THEY WOULD STAY STUCK TOGETHER either forever, or until I forcibly blow them apart (whichever comes soonest).

Pretty gross, I admit it, but still I can’t stop boasting about it. I mean, it’s a time limited party trick if nothing else, right?!

Party trick

Anyway. That’s all from me folks. As is traditional, I’ll leave you with a song to wash it all down with. Another old one because when you are nearly forty, you realise that the old ones really are the very best:

Love you lots like jelly tots,

WeeGee xoxoxo

 

*That’s my non-technical hot take on chemotherapy. If you want a more professional run down, check out what Macmillan have to say here.

**Sadly, it’s not a rock and roll kinda cocktail of drugs

***The deputy chemo ward sister is secretly my favourite chemo nurse

****Technically I’ll have had four of one thing and then four of another