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?
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.
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….
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….
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…..
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!
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.
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…..
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
*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.
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.
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.
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.
Since last I wrote I am pleased to report that absolutely NOTHING of note has happened. There have been no mishaps, mix-ups, mad dashes to the hospital, or major disasters. There haven’t even been any minor disasters. In fact, when all’s said and done it has been calm, quiet, relatively plain sailing weather here in WeeGee land for ooh – at least three whole days. Needless to say, I made the most of it:
And before anybody asks. Yes: I did move, you can tell by the change of clothes and no: I don’t regret a single minute of my lazy weekend in the sun. It was grand. Just what the doctor ordered, thank you very much.
The best laid schemes o’ mice and men (gang aft a-gley)
My last few posts have been a bit functional – a thing would happen, and then I would have to write about it, because when I get to the end of this particular chapter of my life I want to be able to look back through a record all of the things that happened during it. The past four months have been very strange indeed, and while it seems unlikely that I’m going to forget any of it in a hurry, I’m sure in years to come there will be small details that I’ll be glad I took the time to write about. Small details have a habit of escaping from your memory if you don’t put them somewhere safe.
That said, there is more to this chapter of my life than the things that have happened and the small details I hope to remember in the future. There are all the things I have learned along the way – about myself, about human resilience, about hope, and about how important the future is. Then there’s the stuff I’ve learned about kindness, friendship, fragility and even, in a strange and not particularly religious way, about faith. I hope to find time to write about all of those things in the fullness of time.
And then there are all the things I have learned about living with cancer. Nobody becomes an expert on living with cancer, mostly because it isn’t the kind of thing you want to devote enough time to make you an expert. But if you get cancer you just have to find ways to live with it and once you’ve found them, I don’t suppose it does any harm to pass them on to others in case they (or the people they love) need to know about them. Back in January, when I revived my blog, I hoped I’d be able to fit a bit of that into my writing too.
The trouble with chemotherapy is that it has a habit of stuffing up your plans – having extra time on your hands is one thing. But having extra time on your hands and being awake all at the same time? Yeah – that’s another thing altogether…..
STOP THE PRESSES though because I have time on my hands today and I am very definitely awake so I thought I would take the time to share the depth of the knowledge I have acquired on……. dum, dum, dum: living with cancer related hair loss.
Sounds like fun, right?!
Living with cancer related hair loss
Back in January I wrote about the process of shaving my hair off. For me, it was an important decision and formed part of a narrative about control that I wanted to build around my cancer diagnosis and treatment.
I know I’m stating the obvious, but I am not a doctor. I mean sure, I can google medical stuff* and I have enough smarts to make a reasonable fist of understanding some of the clinical literature but at the end of the day, I don’t have the specialist education or skills to figure out how to treat my cancer or make me better. I kinda need an oncologist to figure that stuff for me. Luckily, there are plenty of oncologists on hand to do just that, but I have to relinquish almost all of the control and do exactly what they tell me to do, when they tell me to do it. Against that backdrop, exercising what little control I can has become very important to me. And the first opportunity I got to take a bit of control was related to how and when I lost my hair.
As an aside here, I think it is important to go back and repeat a point I made a while back and it is this: not all chemotherapy drugs cause hair loss. It was certainly an assumption I made, but I’ve met lots of people at the chemo suite with full heads of their own hair still growing very ably. I’ve also noticed my own hair starting to grow back (although only ever so slightly) since switching to the new chemo drugs which are slightly ‘gentler’ than the big guns they went with in the first instance. If you ever find yourself having to have conversations about chemotherapy – and I hope you never do – it might be worth investigating whether you are actually likely to lose your hair before you enter a period of official mourning for it.
But, as things stand, almost all the chemotherapy drugs currently used to treat breast cancer will cause at least some degree of hair loss. There’s no way around this at present – if you want to stop the breast cancer cells from dividing, the drugs that do this will kill off the hair follicles too. From fairly early on, I knew I was going to have to get my head around losing my hair.
Of course, it isn’t just the hair follicles on your head that are affected by the chemo: IT IS ALL OF YOUR HAIR. Which is neither all bad, nor all good. I mean, I miss eyebrows on a daily basis and there are Shakespearean levels of tragedy (or comedy, depending on your mood) to be found in trying to put mascara on your TWO REMAINING EYELASHES, but I haven’t had to shave my legs since before Christmas and overall, I’ll take that.
To cold cap or not to cold cap
In some areas of the country, including where I live in Leicestershire, women undergoing chemotherapy for breast cancer are routinely offered access to a device known as the cold cap. In layman’s terms, the cold cap freezes the hair follicles, protects them from the ravages of chemotherapy and in some cases, stops the hair from falling out. There aren’t, as far as I can tell, any particularly reliable stats on how effective the cold cap actually is. Anecdotally, from the support groups and women I’ve come into contact with, I think the best you can say is that sometimes it works, and sometimes it doesn’t work.
I was offered the use of the cold cap. I decided against it and now HERE I AM, four months and one baldy head on. It really isn’t one that I regret.
In the end, for me, the decision was a relatively straightforward one. For a start, the cold cap adds quite a long time on to your treatment slots. When I was having the EC treatment I was usually in and out of the chemo suite within an hour and a half. With the cold cap I’d have been looking at more than double that. For another thing the cold cap FREEZES your head. I’m not even kidding – it actually freezes it, as in, when you take it off there are ACTUAL ICICLES on your head. I’m not a big fan of being cold at the best of times but in the end, the thought of ACTAUL ICICLES growing on my head was a pretty key factor in my decision making process.
Finally, there are no guarantees with the cold cap. When I weighed up the extra time on the chemo suite whilst ACTUAL ICICLES were growing on my head against my emotional attachment to my hair and then factored in the fact it might not work anyway I just couldn’t make a case for trying the cold-cap. For me – and this is very personal – I decided that it would add further distress and suffering at a time when I needed to make things as easy as I could on myself.
The cold cap just wasn’t for me. I accepted I would lose my hair, shaved it off and somehow, found a way to get along in the world as a baldy woman. Do you know what? I don’t even hate it.
Getting wiggy with it
I got my wig before my hair had fallen out. There are various schools of thought on when the right time to buy a wig is – before treatment starts, during treatment, with a full head of hair, partial head of hair or no hair at all. In the end I think you just have to do what works for you. Personally, I wanted to have my wig to hand straight away in case I discovered a traumatically weird head under my hair. Turns out the head was all quite normal under the hair but, you know, be prepared has always been my motto.
I went for a style that was similar, rather than exactly the same, as my natural hair in the hope that it might sort of trick the eye and lead people to think I’d just had a new hair do. The salon was a personal recommendation from a friend of my mum’s who had also recently had occasion to purchase a wig. I can’t stress enough how important it is to go to a good wig fitter (or ‘hat with hair’ fitter as my chap called himself). If you can get a personal recommendation so much the better, but if not take your time and do some research.
Help towards the cost of a wig is available but it is based on income and I was only entitled to the standard VAT exemption for people being treated for cancer. I didn’t end up with a cheap wig but we also didn’t quite go to the extent of investing in a real hair wig. The difference in price is pretty phenomenal and the advice I got at the time was that the investment wouldn’t necessarily pay off. Plus, I’m reliably informed that real hair wigs are a pain in the bum to care for. Overall and in all honesty, I don’t know if it really matters how much you spend on your wig but I have been warned against the temptation to buy cheap ‘fashion wigs’ from eBay so I thought I might as well pass that particular tip on.
My own experience of choosing a wig was absolutely fantastic. I walked in, the lovely chap took one look at me, produced a wig and put it on my head. That was the wig I walked out of the shop with. It was perfect.
As for my thoughts on wearing a wig? I guess it has taken me quite a lot of getting used to. It makes me looks surprisingly like my mum, which is fine, of course, but disconcerting nevertheless. I struggle to regulate my temperature a bit and tend not to wear it unless I can be sure about how hot (or not) it’s going to be. My fears of it blowing or falling off passed eventually but I do find it hard not to fuss around and fidget with it to make sure it’s straight. And there’s nothing sexier than a woman yanking her wig a few centimetres to the left as she walks up the road is there?
My overwhelming feeling when wearing my wig though, is that of someone attempting the ingognito vibe. I don’t know whether other people can tell whether I’m wearing a wig or not, and to be honest I don’t much care. But I do occasionally feel like I’m dressed up as a character from guess who, or that I’m wearing some kind of comedy disguise. And I’m not entirely sure how I feel about that…..
Fifty ways to tie a headscarf
Spoiler alert! I don’t think there are actually fifty ways to tie a headscarf, but then again I don’t think there are actually fifty ways to leave your lover either. And I’ve been singing that song for days now so I should know.
If the wig has remained a work in progress, I have very definitely embraced the headscarf. I’ve come to take the whole headscarf thing pretty seriously – I have squillions of the things in a range of colours, patterns, fabrics and shapes. Overall, I find you need plain scarves to go with patterned clothes and patterned scarves to go with plain clothes. As a natural brunette I don’t suit particularly pale scarves and white scarves are a complete no-no: I end up looking like the walking wounded with bandages tied around my head. Apart from that anything goes, although I prefer styles that tie to the left hand side for some reason. Oh – and I absolutely cannot get away with any kind of top-tying/turban style unless I fancy the 1950’s housewife, or Professor Quirrell look. Which usually, I don’t.
I’ve been thinking lately about how I’ll miss the headscarves when it’s time to hang them up for good. I think I’ve come to see them as a badge of honour, or perhaps, more accurately as a suit of armour. They sort of mark me out for what I’m going through, but also cocoon me from the worst of it…. I don’t know.
Hey, I’ll tell you what though? Once all of this is done with maybe I’ll just go right ahead and turn into the eccentric middle aged woman I’ve always secretly wanted to become and keep on rocking the headscarf regardless.
Wherever I lay my hat
Hair loss is probably the most visible consequence of receiving chemotherapy and, in its own way, it’s challenging. For my own part, I don’t so much mind being baldy, but I have at times, felt really quite low because I don’t look like myself anymore. It’s an important distinction and not one that would necessarily have made sense to me before my treatment started.
As far as I can tell, some people have an incredibly strong emotional response to their chemo related hair loss before it happens, some respond while it is happening, and others once it’s all gone. I’ve wondered if perhaps I’ll have the strongest response of all when it starts growing back. I find it odd, and not at all comforting, that when it does grow back it will be DIFFERENT. It will be thicker, coarser, very likely curly and one way or another unruly for at least a year while my hair follicles recover from the battering they’ve had.
My biggest fear though? I admit that this is pure vanity but I’m scared it will grow back grey. I am after all, a woman of a certain age now……
But we draw a line under that and move on. This isn’t a post about living with the mad chemo curls that might grow back in a few months time. It’s a post about living with cancer related hair loss. As I reflect on what it has meant for me I can’t help coming to the conclusion that whilst I would much sooner have kept a full head of hair throughout my treatment if it had been comfortably possible, losing my hair hasn’t even been close to the most difficult thing about my diagnosis or my treatment.
Losing my hair was a small, inevitable detail, the price of which pales into insignificance when I think of the future it is designed to buy me. That’s the thing about cancer – you find opportunities to suck it up and look on the bright side in pretty much every situation. Including being a baldie wee woman…..
And that’s all I’ve got to say about that.
I’ll leave you with a song (sorry, I could only find an audio version) and promise that we’ll catch up again soon,
Love you all lots, like jelly tots
*Top tip: don’t google stuff when you’ve got a freshly minted cancer diagnosis.
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.
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.
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.
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….
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.
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.
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.
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,
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.
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…..
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.
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.
Hello, good afternoon and welcome back to WeeGee Land!
I’m sorry about the radio silence recently. I hadn’t forgotten about you or anything like that, it’s just that I was quite busy being a busy bee, and when I wasn’t busy being a busy bee I was busy being asleep. What can I say? Getting pumped full of cytotoxic chemicals on a regular basis makes you helluva sleepy.
The last time I blogged there had been a bit of a blot on my “marching through chemo like a badass” copybook but FEAR NOT that’s all over and done with and things are pretty much back on an even keel. I took a couple of days out to put myself back together and then, when I was all put back together, I set sail again: I got back to work, and back to my life, and whether I like it or not* back to the whole chemo routine. Some days it feels like things have changed beyond all recognition since my diagnosis, but mostly, if I stop and think about it, it’s still just me trying to keep all the plates spinning and doing a passable job….
When is halfway not HALFWAY?
You’ll no doubt remember the excited fuss I made when I got to the halfway point of the chemotherapy? It’s a funny story really, because, well, yeah – that might have been a bit premature. It depends which way you look at it y’see – because it turns out there’s more than one way to count to half way. I suppose now might be a good time to mention that maths never really was my strong suit…..
When I started chemo I knew I would be having eight cycles, each lasting three weeks. I also knew that these eight cycles would be made up of four cycles of EC chemo, and then another four cycles of Taxol/Carbo. Fine, I thought – that’s all nice and clear, right?
What I hadn’t anticipated was that an EC cycle would look like four times worth of this:
Day 1: treatment (epirubicin/cyclophosphamide)
Days 2-21: rest
Day 1: repeat
But that a Taxol/Carbo cycle would look like this four times over:
Day 1: treatment (paclitaxel/carboplatin)
Day 2-7: rest
Day 8: treatment (paclitaxel)
Days 9-14: rest
Day 15: treatment (paclitaxel)
Days 16-21 rest
Day 1: repeat
Or, to put it another way, for the first four cycles I had to rock up at the hospital every three weeks, but for the second four cycles they’re going to need me to show up every week. As in Every. Single. Week. For TWELVE weeks.
So that’ll be fun…..
It was a bit of a blow, coming as it did, on the back of the broken veins/PICC line stuff and the day trip to A&E but, hey, I had a WHOLE day to get my head around it before I was sitting in the chemotherapy suite getting the second-half-but-only-if-you-count-weeks-not-treatments underway.
Nevermind, eh? I’ve got two under my belt already and I’ve started a new countdown so – all together now – TWO DOWN TEN TO GO…..
The Lewis Foundation
Truth told, I was feeling a bit fed up when I turned up for the first of the weekly sessions, but on the day I was properly cheered to receive a sweet gift from The Lewis Foundation – a charity working here in Leicester, Northampton and Kettering to deliver free gifts to people receiving chemotherapy in local hospitals.
Small charities like the Lewis Foundation make such an important difference to people’s daily lives. Like most people, I’ve a lot of time for all of the cancer charities, but the big two (Macmillan and Cancer Research) are the two that crop up most often when you’re in a position to actually donate your hard earned cash. For my own part, I’ll keep on donating to those big charities when the opportunity arises but I’ll also make a point of seeking out these kinds of smaller, up-close-and-personal charities in the future too, because I’ve seen and experienced the very real, personal difference they can and do make.
The nicer side of chemo
I’d be lying if I tried to convince you that chemo was anything other than completely and utterly boring, but there are a couple of up-sides.
Like having a seemingly endless supply of spring flowers to find vessels for….
And the lovely, quirky gifts that make you proper laugh out loud, lift your heart and come to mean the world to you
Meanwhile in other news….
Meanwhile in other news, the Brexit shambles shambles along then, doesn’t it?! I understand that some folk glued their bum cheeks to a glass panel in Parliament earlier this evening whilst the MPs were busy trying to make their minds up about how we should next be forced to die of national mortal embarrassment. So, you know, that’s where we’ve got to with that…..
Anyhoo – it was always going to be a short post this evening. I’ve got a strange mixture of chemo brain fog and wordy block going on at the moment but I thought if I forced myself to sit and write through it I might find a way back to more regular posts. I’m not sure if it has worked or not yet. I guess we’ll find out in the next day or so – watch this space!
To finish up, have a song, why don’t you? I’ll bid you farewell and catch you again soon.
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?
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…..
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….
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.
Since last I wrote I have mostly been being busy writing to my Member of Parliament. Spare a thought for the dude if you will. I mean, it isn’t exactly his fault WeeGee moved to his constituency and then wound up with loads of time on her hands at exactly the same time that the Brexit shit started to REALLY hit the fan…..
Don’t panic though! I’m not about to get all political on you, well, not really anyway. My friends and family get quite enough of that in real life and besides, it’s not as if we’re going to solve Brexit here in one blog post, are we? We just have to accept that some people think it’s all a bit shit, and some people are wrong think it’s a bloody marvellous idea. Regardless of the rows we’ve had over the years and short of a MAJOR* occurrence here in the UK, the fact remains that in less than a month it looks like the UK is set to leave the European Union. The only question, it would seem, is whether we leave in an orderly fashion (whereby we agree to the agreement that the UK Government has already agreed to) or in a disorderly fashion (whereby we do not agree to the agreement that the UK Government has already agreed to). And it’s the prospect of a disorderly Brexit that has led me to seek urgent assurances from my MP. Usually when I write to my MP I do it because I’m a bit of a busy body and I listen to too much Radio 4, but this time it really is personal.
It is still not immediately clear what, if any, plans the Government have made to ensure the continuity of supply of LIFE-SAVING cancer drugs in the event of a disorderly Brexit. As far as the publicly available information goes, the position appears to be “if” everybody does what the government have asked them to do, there “shouldn’t” be a problem. The thing is, I’m pretty reliant on those life saving cancer drugs at the moment – if and shouldn’t don’t really cut it for me and quite frankly, they shouldn’t cut it for the Government either.
I was, and indeed am, a staunch remainer – I’ve never made any secret of my views on this matter. But at this late stage, I am willing to accept that we probably do now have to leave the EU even though I wish it wasn’t so.
But here’s the thing – if we really do have to do this – and I might just about accept we do – WE DON’T HAVE TO DO IT UNTIL AND UNLESS OUR GOVERNMENT HAVE MADE EACH AND EVERY SINGLE ONE OF THE PLANS AND ARRANGEMENTS REQUIRED TO TO KEEP US ALL SAFE, FED, AND IDEALLY ALIVE. That we have anyone in Government (or on the opposition benches for that matter) who would even contemplate doing anything otherwise is the biggest political failure, travesty and tragedy of my lifetime.
And that – as well as this – Letter to my MP – is all I’ve got to say about that……
Here’s a song to play us out. I do so love it and it seemed appropriate…..
Love you all lots, like jelly tots,
*A collective ‘coming to our fucking senses’ might just about do it