It’s been a week since my last chemo and if it wasn’t so exhausting, I would want to quit.
Cumulative sucks.
Onset of fatigue on the evening of chemo. Flatigue set in good and hard on Wednesday. There was no effect of the corticosteroids (apart from night sweats). Heart palpitations en masse (pulse: 115-130) repeatedly throughout the day. Fungal infection but this time I was ready for it – after 6 days of Nystimex, the worst was over.
For some reason, very light neuropathy (just tingling in my finger tips) which is a relief. Or maybe I’m just so flatigued that I’m not registering any pain? I am certainly not complaining.
There are a couple of blogs in the pipeline – if I can just get enough strength to sit at the computer for more than ten minutes at a time.
But yes, still hanging in there, still enjoying the sun through the window.
Yesterday I had my fifth round of taxotere. I can safely say I’m over half-way through chemo! Onco was very happy, MR last week showed a reduction and his physical exam did the same. According to his measurements, it’s now 3*4,5 cm. We had a long chat about side effects and I got a new regime (Lyrica for the neuropathy and Nystimex for the fungal infection – it’s the same as Mycostatin but sugar-free, so should be trigger-free in regards to my perio).
I got the window chair this time! Orchid was dead, but who cares, my stuff is colourful enough. And I have finally found the Perfect Cup – haven’t spilt a drop in a long time with this one!
I also discussed my concerns in regards to Neurontin having such a great effect the first time but none whatsoever the second time (pain management and “head buzz”) and he told me that our bodies react differently in regards to meds and that this is totally normal. Nice to know. I also asked about the fungal infection and whether he thought it originated in my gut or mouth, and he was unsure. He’d also never used Nystimex, so we ended up with a nice microbiological talk about microflora of the mouth.
Stats were good, my white blood cell (WBC, leukocyte) levels are increasing but CRP was at 4 (very low), blood plates and % were normal, good to go for another round. We had a small talk about number of rounds of chemo and the op – we are in agreement that the more chemo I can push into this silly body, the better, and he also agreed that Boxing Day might not be the best day for surgery, but we are now deciding on chemo one round at a time.
Unless I manage 8, in which case there will be 9 and op the second week of January.
Five rounds of chemo means that I am getting cumulative problems. Increased WBC levels (normal levels are 3,5 to 10 but normal for me over the past 6 years has been 11-15). Last week they were at 12, this week 18. It’s the Neulasta injection that increases these levels so we’re still within an acceptable range, as long as the rest of my blood work is acceptable, but definitely a value that shouldn’t increase too much.
My nurse gave me a saline solution to rinse my eyes with. There is a slight possibility that the epiphora may be due to chemo coursing through my system and that rinsing my eyes whenever they start watering may alleviate it slightly. I got several 10 ml syringes. First try this morning – you know how syringes can be really hard to push down and then it just goes BOOM? Left eye not exactly happy with having 1 ml shot in at great speed.
And I am noticing cumulative side effects. The hydrocortisone pills I’m taking no longer give me two energy-packed days after chemo. I started folding and clearing away laundry and managed half an hour before body said “naaaaaaaaaaaaah, much better to write a blog”.
I did start on the Nystimex last night, hoping that it might prevent a complete fungal explosion, although I have stocked up on vanilla and chocolate protein puddings, chicken breasts and yogurt. Apparently one of the protein puddings tastes horrible but as I’ll only be eating them if/when my mouth gets really bad – I’ll use my olfactory memory to remember the best chocolate and/or vanilla puddings I’ve ever eaten!
I shall now try to fold some more clothes. Actually, no, that’s a fib. I shall try to sort clothes into their appropriate drawers and fold them some other day – if and when I have the energy – at the moment I’ll be happy to get all the clean clothes from the hamper into correct drawers…
The book in the photo is “Stien tilbake til Livet” by Long Litt Woon. Unfortunately, only in Norwegian as we speak but it has been sold to many countries and it is highly recommendable! Information, facebook page and a good book review (both in Norwegian).
It’s October, which means it’s Pink Ribbon Month, Breast Cancer Awareness Month (for your national wesite, check out NO, UK, US). In Norway the focus this year has been on long-term effects of cancer treatment. Guess what – a large percentage of women who have undergone breast cancer treatment never return to the work force.
And guess what else? The number of cases are under-reported and most of these women feel shame because they are unable to return to the activity levels of their previous job & personal life.
Not because they don’t want to, but because somewhere along the line, they got some unpleasant side effects that turned out to be irreversible. I’ve already mentioned CIPN. CIPN can actually appear up to two years after end of treatment, can appear in women who weren’t bothered by neuropathic pain during treatment, and can be completely debilitating.
F(l)atigue can also turn chronic. Fatigue sufferers often find themselves ridiculed as lazy. They often receive little or no understanding for lying on the couch or in bed all day.
If you’re one of those people who call fatigue sufferers lazy, please read my blogs about it again. And again. And again. Until you realise that no, we’re not lazy. We would feel like we’re dying inside except that requires thinking which again requires energy which WE DON’T HAVE.
I’m not even going to venture into the psychological hell that a (single/double) mastectomy can send any woman into. Or chronic alopecia. Me, I don’t care. It’s not the first time I’m a skinhead and I’m loving having an arsenal of wigs to play around with – but that’s me. Permanent baldness is still a taboo.
I almost forgot about chemo brain. It is an actual diagnosis, can start long before you actually have chemo, can last for years, and is a mental fog that just won’t let go.
“Doctors and researchers call chemo brain many things, such as cancer treatment-related cognitive impairment, cancer-therapy associated cognitive change, or post-chemotherapy cognitive impairment. Most define it as a decrease in mental “sharpness” – being unable to remember certain things and having trouble finishing tasks or learning new skills” (American Cancer Society)
If the tumour is hormone-sensitive and you get anti-hormonal treatment, menopause may set in prematurely. It’ll probably be worse than natural menopause (due to it happening much faster on drugs) and you probably won’t be allowed to get hormone treatment to lessen the symptoms. Even if the tumour isn’t hormone sensitive, you may experience early menopause.
Osteoporosis is also a common long-term effect but as it is a well-known effect, bone density is usually monitored.
These symptoms are diagnosible and are, at least medically, accepted as such. Docs may not know of any treatment that can help, but at least they can give you a black-on-white diagnosis to help with insurance and/or benefits.
But not all women get easy diagnoses. Some of them get a mixture. Light fatigue, enough to make looking after your grand kids a nightmare, not enough to make you connect the dots. Aches and pains all over the system. Complaining to friends and family doesn’t really help cos they think you’re lazy. You need to work out more, exercise more, get out more, it’s your own fault.
So you go for power walks four days a week and go to the gym four days a week and you just feel weaker, but everybody’s saying that you’re just lazy and need to up the ante, power walks seven days a week and the gym five days and you just feel more and more tired. Only thing is – aching muscles and joints is another long-term side effect, and no amount of exercise or bad-mouthing is going to fix it.
Oh, and make sure you have a good dentist and get a full check-up before treatment, during and after. Many women end up having to draw several teeth and that’s expensive if you can’t prove that it was due to chemo.
A common side effect of taxanes is having your nails loosen and fall off. Yes, that is a thing. They shrivel and fall off. They can keep falling off for at least a couple of years and it is as painful and uncomfortable as it sounds. The exact mechanisms are unknown, but using nail hardener and dark nail polish, just not on the part furthest down where the nail “breathes” may help. Or not. The problem with not knowing the mechanisms is that one can only assume that it helps – statistically, who knows. At least iut’s a good excuse to wear lots of fun nail polish!
After a mastectomy there’s also a really big chance that you will experience a lymphedema and/or reduced mobility in the shoulder/arm of the op. Physical therapy can help with the mobility issues – but some patients will never regain full mobility.
There’s also the probability that you’ll find a lump in your remaining, so-called healthy breast. It’s probably just a cyst or benign tumour, but you’ll most likely have to wait days or weeks to get it checked out – thousands of minutes in hell waiting to find out if it’s malignant or not.
If you’re unlucky enough that the tumour is in your left breast and you need radiation over your heart, you may be at risk of cardiovascular problems.
And there is a large risk of getting cancer again. Just cos you’re cancer-free doesn’t mean it’ll stay that way always. The meds may cause cervical cancer and/or endometriosis so annual pap smears and ultrasounds are a good idea. Radiation will make you more prone to skin cancer, so you’ll have to take extra care whilst sun-bathing and never ever use a tanning salon/solarium again.
Oncologists no longer say that you’re healthy even if they’ve removed every cancerous cell from your body. If you’ve had breast cancer, it’s a bit like being an alcoholic – you might not have touched a drop in 50 years, you’re still an alcoholic. You’re temporarily cancer free, and you will never feel safe from cancer ever again.
“Breast cancer can come back or metastasize (spread) in three general areas:
the breast area where the cancer was originally diagnosed; this is called local recurrence
the lymph nodes in the armpit or collarbone area near where the cancer was originally diagnosed; this is called regional recurrence
another part of the body such as the lungs, bones, or brain; rarely, the opposite breast; this is called metastatic or distant recurrence” (breastcancer.org)
25% of all women who have breast cancer will experience recurring cancer (cervical cancer or skin cancer as a nasty, long-term side effect aren’t “recurring” so those cases are in addition to the 25%). The good news is that we now have a lot of drugs and treatment regimes so even with metastatic spread, chances are quite good that you can live for many years with chronic cancer.
The bad news is that recurring cancer can appear many years after you were treated and labeled cancer-free.
The really bad news is that metastatic cancer can be difficult to catch, even with yearly check-ups, and the longer the cancer can spread, the greater the risk for it being terminal and not chronic.
Five year survival rate for primary breast cancer is 89% (Norway, 2006-10). The same rate for metastatic cancer is 20%.
So … early detection is important. Use the lemon chart and visit knowyourlemons.com as there is a lot of great info there. See your doc if you’re in doubt. Don’t think “It won’t happen to me” cos it can. Cancer doesn’t discriminate and it doesn’t matter how rich, smart, beautiful, funny, young or amazing you are – you still might get it.
I know, I know, I wrote somewhere that I didn’t cry. Much.
Except these last ten days I have been crying almost non-stop.
Not that I’m sad or anything, it’s just that my tear production has increased so I’m sniffling and crying all day. It even has a fancy name: epiphora (which is also a genus of large moths).
Not that I’m complaining. The opposite side effect – dry mucous membranes – is loads worse.
So why did I write this small blog? To post this video, of course. The finest studio ballad they ever did.
Give me some place that I can go
Where I don’t have to justify myself
Swimming out alone against this tide
Looking for family looking for tribe
Although Family (Sullivan/Heaton 1987) isn’t my absolutely fave NMA track (NOTHING can ever top Vagabonds (Sullivan 1987) and all the amazing memories and good vibes it brings back), the chorus is so true in my heart.
The last blog posts have been rather depressing, so I thought it was time to write about the good stuff. Cos apart from the fear of CIPN and being a bit handicapped at the moment, I’m still feeling good and on the right track.
Me’n’my tribe. They surround me and carry me and protect me and keep me safe.
Mostly because I do have the most amazing tribe looking out for me! Time to give praise where it is due. And here they are, in random order:
I have the most amazing fiancé. He takes so good care of me. He’s the reason I get out of bed every day. He follows my lead on how this is going (ie isn’t all doomsday and super-worried cos I’m not). He gives me what I need when I need it. No matter what, if I need a hug cos life is hard or if I need him to talk about something silly cos I need his voice to move my focus from the pain, he does it without asking stupid questions or making useless suggestions. This journey would be so much harder without him!
I have a hospital support person. She comes with me to the hospital when she’s not working. She’s awesome! Yesterday, she was such a great influence that I managed to make it to the MRI and blood work and all sorts without spilling coffee on myself at all (yes, I do tend to do that, I take it as a sign that I’m not quite an adult yet). She makes sure I have enough food and drink, she’s excellent company during long waiting hours and is definitely the perfect hospital support person! She’s also my “New Model Army live in Oslo” person so we’ve seen them twice so far. Hopefully it won’t take them three years to return…
I have a sushi person. We have dates at Sea Sushi in Oslo, and we always order the same thing (F27 and H15). And it always tastes absolutely amazing! And she’s amazing, too. She sends me post cards. I love getting post cards! She has turquoise hair (I feel I was a good influence on that part) and really interesting jobs.
I have a coffee (and concert) person. She works really long hours and has a very busy schedule but if we manage to sync diaries and she can sneak out for a coffee, we do. Working in the middle of Oslo means we’ve seen plenty of interesting/fun/scary stuff on our walks (just please don’t make me eat that raw food chocolate ‘cake’ again…)! We also share a love of Industrial, so we’ve seen Laibach and Ministry together (I just need to book her waaaaay in advance) and hopefully we’ll get to see them again soon!
I have a hair person. She almost cried when she chopped off my hair, but she was brave and we had a really fun day. She was the creator of the most amazing hair cut I’ve ever had (it was super short and the style lasted as long as my pink hair did) and the first to dye my hair bright pink. She’s my second longest friend of the lot and she means the world to me. She is also the reason I do have a functioning, brand new ear thermometer, cos basically I have no immune system and could die from a bad infection. If I get a fever I don’t get to pass GO or collect $200, I phone the onco ER and they decided what I have to do (in my case, “fever” means two readings over 38°C in 30 minutes or any single reading above 38.5°C). I tried it out and had to laugh cos within 5 minutes I ranged from 32.7°C to 36.8°C (8 measurements). The statistician in me snorts and finds my lack of consistency hilarious.
I have a nutritionist. He’s awesome. He was the one who figured out that my weird food intolerances were actually a histamine intolerance, so now I take an anti-histamine every morning and can drink milk. And eat rice porridge. I have no idea what I would have survived on without that. And I can eat loads of stuff that made me really sick for years and years. If I have any nutrition-related questions I know that he’ll answer them quickly and correctly. He’s also the guy who told me (once I was on chemo) to splurge on sugars cos that’s what my healthy cells want, and that gluttony is good.
I have a pharmacist. If she can’t answer any medicinal query I have, I have no idea who else to ask. If I need any meds she makes sure that her pharmacy has them (it only takes a text). She’s also a steady supplier of coffee and sugar bombs to feed the glutton in me!!
I have forest people. I love foraging for mushrooms, but this year, my body has been unable to actually pick all the mushrooms. And there is nothing I hate more than going foraging and having to leave mushrooms behind. Luckily, I have forest people who will walk with me and pick all the mushrooms that I can’t pick, and if I do end up picking a fair amount they’ll carry them for me. I’ll point out a patch of mushrooms and they’ll go “Hang on, we haven’t finished picking these yet!” and I’ll sit and enjoy the smells and sounds of the forest.
I have an old friend. We go back almost 30 years – that makes us sound ancient, I know – and she’s an all-rounder! She helped me pick out a wig, we’ve done food and concerts and phone calls. She’s always there if I need her and I can always count on her!
I have a new friend. After a couple years’ facebook friendship, we finally met irl a couple of weeks ago. We chat loads and she keeps sending me fun internetz ztuff and makes me laugh. Even if she lives in a silly town, we have a great date planned for after I’m done with treatments.
I have a road trip person. We go on looooooooong road trips abroad every 2-4 weeks (ie Töcksfors). Sometimes we even go as far as to Årjäng. She’s also my forest garden person and we’ve laid some awesome plans for next year!
I have cancer people, both friends and strangers (in a couple of bc facebook groups). They’ve given me good advice, they have great suggestions on how to alleviate side effects, and they’re quick to reply to any query I may have and I don’t really have to explain anything to them cos they understand.
I have social people. They invite me to fun stuff: outings, events and restaurants, and they make sure I have a great time. They always have a spare bed for me and ‘su casa es mi casa’. Sometimes meeting up irl is difficult cos of my neuropathy or being carless, in that case we chat and make plans for what we shall do when I am mobile again. I like making plans. I like chatting with people. It’s the one thing I can do even when my mouth is painful, I can’t walk and I’m the lead in the movie franchise “Carless in Kroer”. Then again, I also like spontaneous people who call and say “I’m fifteen minutes away, ready for a road trip?”. It’s more difficult to cancel if the invitation gives you 15 minutes to shower, brush your teeth and get dressed. Yeah, I never spent much time in the bathroom. Social people are also good for commenting on the blog and the facebook page. I love it when the inbox reads “1 new message”. It’s almost as fun as a post card!
I have sistahs. In addition to the two I have in England, I have a twin in Oslo. She’s awesome, too. She’s a fierce tiger who keeps sending me cheery messages.
I even have an adult person! Which I need, every once in a while, cos I suck at adulting, big-time. Never learned how to do that.
I have animal people. They have horses, sheep, cows, pandas and hairy piglets. They take me on expotitions (though we never go to the North Pole) and even if I do sometimes have to get up at 5:30 am (that was seriously far too early), I always enjoy myself. Just because my body doesn’t want to ride doesn’t mean I don’t like hanging out in stables, and calves are always fun to watch. And who doesn’t appreciate knights in shining armour jousting on a hot summer’s day!
I have forin people. I love them to bits but they live in other countries so I won’t be able to see them for absolutely ages. Luckily, there is chat. And the postal system.
I have helpful people (in addition to all of the above). If we’re out doing something, they make sure I don’t overexert myself. They’ll pop me on a bench so I can rest, make sure I stay caffeinated and fed, carry heavy stuff and do the stuff that some part of my body refuses to let me do. They’re the ones who ensure that I can do seminars and meetings and stuff and I cannot thank them enough.
And finally – I have you. If you’ve read this far and thought “She’s not going to mention me” then here’s to you. Thanks! Writing a blog is more interesting if you know that at least one person reads it!
But … yeah. I have the most awesome tribe. They’re not afraid to ask questions but realise that I don’t necessarily need to talk about my situation. They – you – keep me going and help me keep my mood and chin up. Thanks. There’s a massive party on the other side of this <3
I think I’ve said it before. Actually, I know I have, but it can’t be said too often. I have the bestest two sisters in the world and I am most sad that there are massive amounts of water between us. Luckily for me, they always sorta stay near each other.
This arrived in the post today. It’s a ‘fing’ of sugilite, stars, pink and love. It’s a love stone. For me. From my sistah. And I love it! Oh, and yes, it is as heavy and gorgeous as it looks. Very nice purple. My kinda purple. And hers. *squeals with joy*
And science brain is being very quiet (although neuropathic fingers are kinda screaming) cos the truth is, science wouldn’t be of much help if I were alone in this. If I didn’t have a tribe watching my back, keeping me company, keeping me sane, holding my hand, making sure that I am moving forward.
Science ain’t much help if you’re in this fight alone, cos it’s a hard and rocky road and there are precipices all along the really narrow path and it would be so much easier to just give up and give in and admit defeat.
So science brain is being as quiet as a mouse, thinking that I am so grateful to all the people (and cats) out there who keep me on that path and keep me as well and happy as can be, and who make my life worth getting up for even on the days when I would have much rather stayed beneath the covers.
I even have an English rabbit (proper one, not a Derbyshire Rarebit-rabbit) boiling on the stove right now. How’s that for coincidence?
A dear friend of mine took this picture, sent it to me, and told me that fungi should live outside in nature, not in my mouth, and I totally agree! But I love this face. Sometimes nature makes the most amazing works of art, we only need to look closely and they will appear! And I would love a forest-themed wig, made with leaves and mushrooms and conks and all sorts of fun things. This one feels like a reflection of myself, in a weird way.
The third and last of my major side effects is a fungal infection in my mouth. I’m used to having an extremely keen sense of smell and taste. Because of the periodontitis I have a massive hygienic regime of cleaning my teeth and mouth. I also need to take precautions in using antibacterial agents, as I need to keep the good bacteria as happy and vivacious as possible!!!
First round of chemo, I had a woolly sensation in my mouth for two days or so. Nothing to worry about really (I was already down with flatigue so non-functioning mouth wasn’t much of a worry).
Second round, woolly and non-functioning taste buds for five days. That’s a bummer cos you don’t really want to eat as everything tastes of either nothing or just weird or off. Your mouth feels as if you got badly burned on a cup of hot cocoa – a bit numb, a bit painful, talking isn’t really an issue cos woolly. You don’t want to eat anything sharp cos your gums and everything is sore. You certainly don’t want to eat anything that attaches itself to anything, cos your tongue is just not functioning at all.
Third round, I asked for Düsseldorf mixture cos it was supposed to help.
It didn’t.
My mouth was pretty much non-functioning for twelve days. I made a large pot of rice porridge on the Saturday and that was mainly what I ate for the next ten days. I like rice porridge and I could taste the sugar and butter, cinnamon I used cos it smelled good when I was pouring it on (my smell still works) and I could easily imagine the taste of the porridge. Olfactory memories are great things, cos it means that if you can get some of the taste, you can pretend that it all tastes as it should. I used so much cinnamon that it covered the bowl (and was reminded of my friend, who claimed the cinnamon diet was amazing) mostly to check if my taste buds were working again.
Düsseldorf mixture didn’t have any effect so after consulting with my dental hygienist, I stopped using it (as it’s an anti-microbial agent and probably maiming and killing off my nice bacteria).
Fourth round I got Mycostatin oral drops which is an oral suspension that provides local treatment of fungal infections. We were at war. I like eating food I can taste. My taste buds may like weird stuff, but eating food devoid of flavour is just off. After having checked with doc, pharmacist and specialist dentist (who prescribes it all the time) I was all set: standard deep teeth cleanse morning and evening, light brushing and mycostatin whenever necessary. Which for the first three days was on an hourly basis. And as it’s only effective as long as you are actually keeping it in your mouth, you get used to keeping your mouth shut for 15-25 minutes at a time.
The first two nights I would actually wake up every hour or so and administer it. I love insomnia.
The third evening my fiance had hamburgers for dinner. They smelled soooooooooo delicious and I got that devilish hunger for meat. Any kind of meat would do. I fried some hot dogs with tomato paste (cos, you know, taste and all that) and herbs and garlic and they tasted – nothing. I could feel the texture but was really glad they were cheapo hot dogs cos booooooring. No taste at all.
But after five days of intensive treatment, it feels as if I am regaining some control of my mouth. I could taste the cinnamon this morning. I think I could taste the cranberries in my rye bread (although that may have been the old olfactory memory, cos the cranberries are nice and gooey). I have another three portions of porridge left, so hopefully I’ll taste the cinnamon tomorrow morning.
I’m not really afraid of much, to be honest, and although I sometimes have to face my fears (driving in snowstorms on icy roads) I tend to just avoid stuff where I don’t feel comfortable (roller coasters and great heights). I don’t mind spiders or snakes or other yucky things. I don’t mind that my hair’s all gone and might not grow back (though that’s for another blog).
But chronic neuropathy – that scares the hell out of me.
Neuropathy is the second nasty side effect I get. It comes from neuro = nerves and pathy = sickness, and basically means that your nerves are ill. The physical nerves. The ones that transmit sensations. The ones that cause phantom pain in amputees. The ones that make your nose hurt when you wax your legs.
Neuropathy in the extremities (feet and fingers) is a common side effect for taxanes. Unfortunately, it can also become chronic.
Let me try to explain what neuropathy feels like.
In case you hadn’t noticed, I love my heels. I love dancing. I love dancing in heels. For everyday wear, I’m more boots and sturdy footwear, but for fun, I used to love putting on my heels and sashaying along.
These are my favourite pairs. Were. Still are but there is no way I will be wearing them for a while. If you look at them – I cheat. They have really sturdy soles that are a great support for my feet which means you can dance all night without noticing that you’re wearing heels!
Now, imagine that the soles are really thin and flimsy, you can feel every grain of sand that you walk on. They still look good but aren’t really all that danceable. Yet you go out dancing, with the flimsy soles, all night long, and you wake up with really sore feet cos that’s part of the deal. All your feet want to do is be kept off the floor. But you go out dancing again, and dance the night away in the same flimsy shoes, and the next day you are in PAIN. Every nerve underneath your feet is hurting, and your ankle is kinda complaining, and you seriously regret both the first and certainly the second night of dancing.
But you love dancing, and you want go out again for the third night in a row – but this time, your feet revolt. They can’t take any more. Our bodies are a bit awesome that way – they will refuse us doing stuff that is dangerous. Your hands are having problems putting them shoes on cos feet = pain at this point.
Instead of going out and having fun, you get in the bath cos you can’t really walk. The soles of your feet are burning. The bath doesn’t help, so you figure that crawling instead of walking is a great plan – except you keep hitting the floor with your burning feet. You drag yourself onto the couch and decide to stay there the rest of the night cos at least the pain is slightly less (although you are having problems concentrating cos – pain brain – not much higher cognitive function there). And the couch is almost as comfortable as your bed, to be truthful, and you don’t really need to brush your teeth cos that demands standing – and that is so out of the question.
That’s neuropathy. And if you got it because you danced too much, chances are it’ll fade. If you get it from chemo there is a very real risk that it will become permanent.
Neuropathy isn’t a diagnosis, it’s a symptom. A lot of illnesses (and meds) can cause neuropathy. Unfortunately – there are very few treatment options. I was prescribed gabapentin/Neurontin which is an anti-epileptic drug. It helps som people. Others get some help from pregabalin/Lyrica. But for a lot of sufferers, neuropathy cannot be treated and the pain is constant.
So yeah, I am terrified of CIPN (Chemotherapy-Induced Peripheral Neuropathy). Every day I have neuropathic pain, I wonder if this will be something that returns in a month or a year for eternal feet burning.
And did I mention it also attacks my finger tips? Try picking up pills with non-functioning finger tips. Great fun and an interesting challenge.
I got some fluffy slippers. I have no idea why they seem to make things worse. Maybe cos the sweat isn’t released out? But I love my pink fluffy socks! Between the neurontin and these marvellous babies, at least I can kinda walk.
I have no idea which silly person decided that the way I’m feeling now, can be described as “fatigue”. You don’t feel fat, you feel FLAT. So FLATIGUE is a much more appropriate word.
And it’s hitting me earlier. For the first three rounds of Taxotere, I had three high-energy (everything’s relative, right?) days and then three flat days. This time, flatigue hit on day three and the first two days weren’t exactly brimming with energy. But four rounds in means I am at least half-way on my journey with yew. And they keep showing up – I think I may have to plant one or two, to remember this year, lest chemo brain sets in so badly I forget.
That was a joke. A crap one at that.
This is Lurven. If he were a human, he’d be a bit thick, with a beer gut and he would defo be your favourite uncle. IRL he loves stealing voles from the other cats cos they’re yummy (although he is a fierce hunter himself), he’s fiercely protective of his siblings and he just lurves his hoomins. He gets really worried when I’m ill, so yesterday I spent the first four hours of the day in bed with him on my shoulder, purring away as if to keep me safe.
Four hours is how long it took for me to actually scrape up enough energy to think about getting up, actually getting my body out of bed, putting on sweats, and going into the kitchen.
After eating some ‘food’ (with the fungal infection in my mouth, nothing tastes of anything so it’s more a case of finding something I can swallow) I went back to bed and he threw himself onto the duvet, found my shoulder and snuggled back in.
Nice, hard, steady purring. Nice massage. Too f(l)atigued to fall asleep, but at least I could focus on his purring and after another three hours I nodded off.
Today neuropathy set in as well. If you think three is a lucky number – sorry mate.
Or. Depends. I see Karjala is waiting for me to crawl under the bed covers again. Gussi is also skulking around the bedroom. Three cats, one for each symptom. See y’all when flatigue turns into fatigue…
(possibly) last gig of the year was Nick Cave & the Bad Seeds at Oslo Spektrum on Monday. I am tempted to go see Laibach on November 11th, although I must admit I am slightly worried about how bad the side effects will be after 5 rounds of chemo and probably won’t buy a ticket until the same day. If there are any available!
Back to Nick & the Seeds. They’ve been on my play lists for close to 30 years now, since Kicking against the Pricks (I think it was the cover of All Tomorrow’s Parties that got me started). Most artists who have been around for decades can be sorted into two: they still make the same kick-ass music they made 30 years ago, and even if you haven’t heard the last two-three-five albums, you know what you’ll get. Joan Jett, Ministry, Nine Inch Nails, Raga Rockers are bands I’ll happily go see cos I know what I’ll be getting.
There is a slight grey zone that included Bowie and Lou Reed, where the style varied but was always great!
Now, Nick Cave (and Einsturzende Neubauten/Blixa Bargeld, cos natural succession, and Haus der Luege is still one of my fave albums ever) belong to the second group. Artists who change their style dramatically over the years, and not necessarily to (what I consider) the good.
One reviewer even called him a “ballademaker” which in Norwegian translates to ballad writer. In Danish it would have meant troublemaker. The Nick Cave I grew up with did not write ballads. He wrote noize. Not as much as Blixa, but it was loud and heavy, post-punk (after The Birthday Party) goth rock.
Still brilliant up until 1997 – The Boatman’s Call marked (for me) the beginning of the end of the Cave I knew.
First time I saw Preacher Man was at the Quart festival in 1996. The most excellent day of gigs (first time I saw Ministry, too), the sun was shining and wow that gig was awesome. I’ve since seen him at the Grieg hall in Bergen (1998?), him and a grand piano and that too was wow – mind blown!
To be fair, the guy is a true master of words and his lyrics have always been dirty, black, dealing with death and religion and war and horrible things with perfection. I love his books. It’s just the music that has become so – ballady. Too sweet. My expectations were, needless to say, not exactly sky high.
And although there were too many ballads, there was also true perfection for old, cranky, die-hard fans such as myself. I love From Her to Eternity. I hate studio-Tupelo but live it is so black and slow and amazing that it is an absolute fave.
But top of the list – The Mercy Seat. The song that caught me in the first place, hook, line and sinker. Got me addicted, got me wanting ever more, in the most amazing ballady version. That is, my kinda ballad – soooooo slow to start off with, slowly gaining momentum, never letting go, never loosening that fiddle that drags it along as I imagine those on Death Row drag their feet on the way to the Chair…
And fitting that it was the day before my 4th round of chemo. Though my “mercy seat” includes great service, all the coffee I could want, food, good company and meds that are making me better.
Cos positive side effect #2 showed itself Monday. Concerts have, for me, been a right pain since my body stopped working. Standing on concrete floors – even if I’ve been moving – has frozen my lumbar region so if there have been bands I want to see, I have to really, really, REALLY want to see them cos after half an hour, I have been in pain, and the concert better be hard enough too be able to knock through that pain.
Not Monday. Monday went great. Back worked perfectly, didn’t crumble, didn’t stiffen, I didn’t have to bend myself gently into a chair after it was over. Yay! Hoping for four more rounds of chemo… this can only get better, right?
Oh, and all the pics are from the Quart festival in 1996 cos seriously, Preacher Man hasn’t aged at all. Probably wearing the same clothes, too…
And guess what else? The number of cases are under-reported and most of these women feel shame because they are unable to return to the activity levels of their previous job & personal life.
F(l)atigue
If the tumour is hormone-sensitive and you get anti-hormonal treatment, menopause may set in prematurely. It’ll probably be worse than natural menopause (due to it happening much faster on drugs) and you probably won’t be allowed to get hormone treatment to lessen the symptoms. Even if the tumour isn’t hormone sensitive, you may experience early menopause.
But not all women get easy diagnoses. Some of them get a mixture. Light fatigue, enough to make looking after your grand kids a nightmare, not enough to make you connect the dots. Aches and pains all over the system. Complaining to friends and family doesn’t really help cos they think you’re lazy. You need to work out more, exercise more, get out more, it’s your own fault.
A common side effect of 
If you’re unlucky enough that the tumour is in your left breast and you need radiation over your heart, you may be at risk of cardiovascular problems.
I think I’ve said it before. Actually, I know I have, but it can’t be said too often. I have the bestest two sisters in the world and I am most sad that there are massive amounts of water between us. Luckily for me, they always sorta stay near each other.
In case you hadn’t noticed, I love my heels. I love dancing. I love dancing in heels. For everyday wear, I’m more boots and sturdy footwear, but for fun, I used to love putting on my heels and sashaying along.
This is Lurven. If he were a human, he’d be a bit thick, with a beer gut and he would defo be your favourite uncle. IRL he loves stealing voles from the other cats cos they’re yummy (although he is a fierce hunter himself), he’s fiercely protective of his siblings and he just lurves his hoomins. He gets really worried when I’m ill, so yesterday I spent the first four hours of the day in bed with him on my shoulder, purring away as if to keep me safe.
(possibly) last gig of the year was 
Now, Nick Cave (and Einsturzende Neubauten/Blixa Bargeld, cos natural succession, and Haus der Luege is still one of my fave albums ever) belong to the second group. Artists who change their style dramatically over the years, and not necessarily to (what I consider) the good.
Still brilliant up until 1997 – The Boatman’s Call marked (for me) the beginning of the end of the Cave I knew.