Icicles & more …
June 2012
Off we go then.
Blog-the-third attempts to say something about the reality of
chemotherapy.
Hope this doesn’t depress anyone too much. Various folk have expressed an interest in
the actuality, so I thought I’d try to capture some of it at least. I think it’s a delicate balance between
stating the case as it is (or is for me), and being either falsely positive, or
unnecessarily negative. The line between
having a positive attitude (without question the way to go in my mind) and
denying the actual nature of the situation seems a thin one to me. Therefore, I’ll just do my best …
So I’ll mention here that, as you’ll no doubt know, many
people successfully work full-time all the way through chemo and manage to
minimize the short-term side effects successfully enough to make this possible. I think you have to be a pretty determined
type to achieve it, but it is definitely possible. Lovely Jacq, running her own company, has
achieved exactly this, in spades. In my
case, I’m thankful not to be an employee at this stage, and to have the time
available to take a slower approach.
I’ll emphasise here that the nurses general position
seems to be just get on with living your life, and deal with any issues if and
when they arise. Good advice. Slightly easier said than done, but still
good advice.
If you’re feeling delicate yourself and don’t want to
know the reality, that’s ok with me, just skip reading this blog altogether and
catch up next time round.
But, Lord above, where do the icicles fit in? (it’s coming …)
Chemotherapy City …
What is it like there? …
April to August 2012
Chemotherapy – ok, admittedly
there are pleasanter ways to spend a day, but on the other hand not as terrible
as you (or I) might fear. Almost everyone
I talk to seems already to understand a great deal about chemo, but for those
still lucky enough not to I’m going to have a go at explaining a short(’ish)
version of how things are day-to-day.
Can I just say, the obvious really does have to be emphasized – that
every person undergoing chemo truly is experiencing a different journey.
Theoretically the same in
broad principle, but drastically different in the detail.
Just like the rest of life
then. Here goes:
- There are over 50 chemotherapy drugs given in various ways – some are given on their own, some as two or more drugs together – called ‘combination chemotherapy’. Doses depend on things like each persons own height and weight, and of course their condition.
≈≈≈≈≈≈≈
- My little cocktail is a two-part combo called EC90. The drugs are Epirubicin and Cyclophosphamide. As we all know, the internet is flooded with info on all the drugs, but for those that want it I really like the clarity of www.chemocare.com by Scott Hamilton.
₪₪₪₪₪
- Chemotherapy for most people (including me) means ‘cytotoxic chemotherapy’ i.e. toxic to cells. As far as I understand what’s happening is the drugs attack every (rapidly dividing) cell in your body - that’s why you feel sick and exhausted, because you are under quite severe internal attack. The attack, and its side-effects are temporary – that’s why you, hopefully, get to recover.
◊◊◊
- The idea goes along the lines of normal cells are well-developed, orderly, solidly structured, and can therefore recover from attack. Cancer cells are apparently quite scruffy little individuals, chaotic and lacking structure, tending to give up the ghost fairly easily when pressurised. So, that’s the aim, the good cells reassert themselves and live, and any bad ones croak-it. Good.
◙◙◙◙◙
- Coming along at present are the newer anti-cancer drugs, which rather than taking the generalized approach above, are targeted treatments i.e. capable of targeting specific parts of individual cancer cells, and leaving healthy cells alone. Therefore considerably more relevant (and less generally harmful) in the case of each individual. Sounds fine to me - bring them on!
♦♦♦
The Chemo Cycle …
It’s all in the planning …
- So, each chemo cycle is 3 weeks – that’s 21 days to get attacked, recover, and prepare for the next attack. The timing of the side effects is all quite precise, so actually that’s very helpful. It means you know which days you’ll feel poor, and which days you’ll feel normal. That’s great because it means you can actually plan the odd nice thing in – but you do need to get your timing right.
₪₪₪₪₪
- Of the 21 days, the first is the actual chemo day. This is not as bad as ones mental image might portray. For me (and most I imagine) the setting matters. In York, luckily, this is a perfectly light and airy room full of perhaps ten very comfortable big armchairs for patients, whizzy chairs on castors for the nurses, and more chairs for companion, and lots of high-tech medical equipment!
◊◊◊
- The actual process of delivering the chemo drugs is very straight-forward. The nurse inserts a cannula (thin, flexible tube) into a vein (hand or arm), attaches you to a drip and starts hooking on several bags of fluid containing the drugs in rotation, which drip in slowly. Takes about an hour. If it wasn’t for the damn icicles, that would be it!
♦
- What icicles I hear you ask? (it’s coming …)
♦
- The nurses in York are really quite great. Like swans – nice and calm on the surface, and apparently paddling like mad to get it all done underneath. I’d honestly say I like the atmosphere they’ve created here in York. It feels calm and controlled. Well done them. Tea is delivered frequently (by volunteers) and companions are made welcome.
≈≈≈
- Sadly, the old post-code lottery applies here. My beautiful friend Chris did not have such a comforting experience in Essex. She encountered patient over-crowding, horrible surroundings, and exhausted staff barely able to cope with their work-load, so spreading very negative vibes liberally around them. Not great – probably no ones fault in particular, but not great.
₪₪₪₪₪
- Back to the chemo cycle. Days 1 to 5 are fairly heavy-duty drugs – for me Emend (for nausea & vomiting) plus Dexamethasone (steroid) plus Ondemet (inhibits serotonin to the brain to reduce nausea & vomiting) plus other at-will anti-nausea drugs. These days don’t feel great – nausea (in spite of the drugs) and tiredness. I can do things, but may run out of energy half-way through.
∞∞∞
- Upsides are always available however. Nurse advice is breakfast in bed whilst taking the drugs, so breakfast in bed it is (cheers again Andy). And just generally lots of lounging about (writing blogs and similar ….). Frankly, I feel I’ve always had panache when it comes to lounging about, so I’m in my element really.
₪
- There’s a thing unscientifically referred to as ‘chemo brain’ – meaning you can be temporarily quite confused. I believe it’s as a result, literally, of the chemo drugs attacking your brain cells (along with all your other cells). For me it seems to result in my saying things that are almost, but not quite, right, thus demonstrating the horrible power of what’s happening internally.
◊◊◊◊
- Days 7 to 10 (or possibly days 5 to 14 if it’s going less well) are when your white cells crash. This unavoidable side-effect is neutropenia i.e. lowered resistance to infection. EC90 reduces your white blood cell count making you susceptible to infection. So not the best time to visit your sick aunt, the theatre, or similar. After 14 days the cells start to recover again.
₪₪₪
- The good days are days 11 to 21. Get out there. Get motoring. The world’s your oyster girl, and don’t you forget it!
♦♦♦
- Day 21 – a quick (30 minute max) visit to hospital for a super-fast blood check to make sure you’ve recovered enough for the next chemo-bashing tomorrow. That’s it – one cycle. Really, superficially not bad at all. So, more than the daily reality, it’s the long-term repercussions I fear the most, but we’ll get to that in due course.
◙◙◙◙◙
Icicles, brrrrrrrrrrrr … What icicles?
Cold, I dread it …
April to August 2012
- Ok, so I can honestly say I haven’t felt fear (so far) as a result of my cancer diagnosis. But cold now, as everyone who knows me knows full well, that reduces me to an incoherent blob. Cold, winter, dark nights, it’s all wrapped up together for me, in fear and dread. That life is periodically full of hazards I accept, and lack of control, and other not-perfect stuff – all necessary in order for us to learn along the way I’m sure. So normally I’m quite philosophical about most things, and have no wish to change any of it, good or bad. But bone-deep-cold, you see, that’s my uncontrollable fear. It takes the desire to be alive right out of me.
₪₪₪₪₪
- So chemo causes hair loss. That’s well-known. It’s the epirubicin, delivered as a red liquid, which causes it. It’s temporary, which doesn’t sound too bad (but actually, psychologically, it is). However, if you’re on certain drugs you have a chance at avoiding hair-loss. It’s called scalp-cooling. ‘Cooling’ – it doesn’t sound sooooooooo bad as a word.
◊◊◊
- Scalp cooling works by literally cooling your scalp and thus reduces the blood supply to the hair cells. This slows the activity in these cells, meaning less hair will fall out. You are fitted with a close-fitting skull-cap (you end up looking like a very squashed jockey), and attached to a cooling machine that constantly circulates freezing water through the inside of the cap.
♦
- The process is achieved by cooling your whole head to minus 5 degrees celcius (which is pretty damn cold I can tell you) for about 5 hours. It starts 30 minutes before the first drugs are administered, and lasts for about 3.5 hours after the last drugs have been dripped in.
≈≈≈
- The initial 10 minutes are horribly painful, then numbness sets in and the pain thankfully eases a bit. So, the main challenge is just to get through the first 10 minutes! I will say amazingly and unexpectedly I have got through the first 3 – purely thanks to Andy being there. We play fast-and-furious card games to distract my thoughts. If he wasn’t there, I would have failed every time.
₪₪₪₪₪
- Five hours later, the cap is removed, and – lord above – your head is covered in icicles! And then it’s time to go home. Now I ask you, is the icicle head look the best way to present yourself to the world? I think not. Yet the nurses say at this point, that’s it, we’re done for the day, off you go. Honestly, we were flabbergasted the first time. Like leaving the hairdressers half-done. But actually, of course, they have no choice. You can’t dry your hair with a hair-dryer or anything as it’s far too delicate and would just give up the ghost altogether and fall straight out. So, it’s pat off the main icicles, on with a hat, and then off we go.
◙◙◙◙◙
- As with all things you’re warned there’s no guarantee of actual success. It works for about a third of people, fails totally for another third, and leaves the last third with random tufts of hair that seem to be of no use to man nor beast. But importantly, one third of folk get to keep their hair!
₪₪₪
- In my case, it seems to be working. That’s a relative statement of course. I lost about a third of my hair after the first chemo (it just falls out uncontrollably in clumps), and a second third after the second chemo. At this point we were convinced I’d got just a few days left of having my own hair, and were panic-buying wigs, scarves and hats like they were going out of fashion.
◊◊◊◊
- Then, the whole falling out thing unexpectedly slowed right down! Yes!!! Hooray!!!!!! So now, I have hair – pretty thin and scruffy I admit, but currently still attached to my head in its own way, and we have wigs/scarves/hats at the ready!
♦
- Bizarrely, although the process of buying a wig has been truly horrible for me (my most traumatizing experience to date in fact), in the end I really like one that I have. I feel like myself in it, which is the main thing for me. I haven’t had to use it yet, but don’t mind the idea that I may end up doing so too much at all. Time will tell.
- Interestingly, just so folk know, I’ve had no scans – not a one – where most cancer people seem to be ‘scanning’ for Britain. I think it’s because it hadn’t spread. Just thought I’d mention it, as that seems quite different to the experience of others.
۞
As far as I’m concerned life is still good and most importantly, its
summer!!!
۞
See you in the next blog if
not before.
