Steroid Strangeness

November 2, 2012 § 4 Comments

I’ve been having these really odd side effects from, I assume, the prednisolone (could just be a manifestation of my own personal craziness of course). I thought I’d share them with you for your amusement.

Crazy side effect 1: Spangly light beams from my eyes

Yes you read that correctly. For a few weeks now I’ve had this really odd feeling that my eyes are shining, spangly light  beams out of them. It sort of makes me feel like I’m some sort of super hero, ‘Spangly light beam woman!’

I might make myself a costume with a big S on the front…hmmmm…actually I think that one’s already taken by some other (less powerful) super hero.

I quite like this side effect, I must admit, however, like  all good things, it seems to be coming to an end… I’ll miss you spangly light beams.

Crazy side effect 2: Comedy hands

I know this is going to sound like I’m mad as a bat, but read on, as this is really how it feels.

Unlike spangly light beams, which is  a daytime phenomena, my ‘comedy hands’ seem to only manifest through the night. I wake up in the night to feel like my hands have grown massively in size and are very heavy. It’s such an odd feeling. It’s a bit uncomfortable. My hands feel like they are several times their normal size and clumpy and heavy. Eventually it goes away, but it is THE most odd of feelings. Again, like my spangly light beams, this effect seems to be going away as Im tapering the prednisolone.

It does make me want to sit up in bed and put my hands out, in jazz hands style and sing the “LumberJack Song” (you can’t help but love Micheal Palin).

As far as side effects go, these two are pretty trivial, but I do wonder what the steoids are doing to my mind to make me feel this way, now that is scary.

Another Chemo down . . .Thank God !!!!

October 22, 2012 § 4 Comments

Today was chemo number five.  I only (hopefully) have one more to go.  I have no reason to think I will need more but with the way things have gone this year I don’t want to assume anything !!!

So today . . . well I’m glad that’s another one out of the way – even the smell of walking into the hospital this morning started to make me feel ill.  I think it is all the smells I am starting to associate with illness and chemotherapy.  I keep thinking about this time last year  when I kept thinking about all the things I had to look forward to with work, travel, relationships etc – how wrong could I have been?  I actually do find it hard to think how wrong I could have been – makes me wonder about my own judgement sometimes.

Anyway, the chemo – feel quite sick this afternoon and very tired.  I also think I sort of ‘worked myself up’ for this one – anticipating that it would be a bit more difficult. The nurses are all so lovely and supportive and have explained that it is just the build up of the chemo in my system.  They have assured me though that it is really good for the cancer, ie it kills it !!!!  I’m hoping it has and that it won’t come back – don’t want to do this again.  The funny thing about the cancer I have is that it shows signs of both slow and fast growing cancer types so until we get through the chemo and subsequent tests I don’t think I will really know where I stand.  And then, assuming I go into remission,  the next 18 to 24 months will be important in terms of monitoring how things progress.  Hopefully it won’t ever come back !!!!!

So tomorrow the community nurse comes to give me my neulasta and then its predisolone (high dose0 for the next five days  – all hopefully for the second last time.  At least now there is a light at the end of the tunnel.  I’m looking forward to feeling better and getting on with my life.  I am hoping that all the good things that I anticipated this time last year, present themselves again.


A reflection on a week

October 20, 2012 § 6 Comments

This last week has probably been the most difficult of all in terms of how I have managed my treatment – the chemotherapy.  I have probably felt sick and tired more than most weeks and my mouth is now very sensitive and sore.  I think I have been pretty lucky to escape the constant nausea feeling but this week there have only been a couple of days where I haven’t felt ill.  I also think I might be stressing out a bit about it because I wake up most mornings with a headache.  I have also been pretty lucky with my mouth which has been in good shape until just the last couple of days.  My tongue feels burnt and raw, the sides of my mouth feel like they have been cut and inside my mouth there are ulcers.  Even my teeth hurt when I clean them – so much so that I dread having to do so.

On the up side i did manage to go for a couple of little walks this week.  It is warmer here now which makes me excited to get outside and into the warm air – a change from the freezing weather of a cold Canberra winter. I suspect that the little bit of extra walking has added to the tiredness.

I have chemo again on Monday and for the first time I am really dreading it.  Perhaps what I am dreading is that I know the couple of weeks that follow will likely be more like the last couple than when I started – when everything was a bit easier to manage. I can smell the chemo on me most of the time and especially when I go to the toilet.  I dry reach these days just thinking of the smell.  It is hard to explain what it is like – just awful and all the m0re awful because now I associate it with the nausea.

Another person I know was diagnosed with breast cancer this week.  I thought of her all last night – knowing what it is like in those early days and not knowing what to expect in the future.  Her journey is just beginning and I am all too familiar with how scary that is.  I was talking to someone else yesterday who told me about a young guy with three small children that died during the week.  He was diagnosed with kidney cancer three weeks ago. How is it possible for it all to happen that quickly?  How is it that someone doesn’t know they are that sick until they literally have only three weeks to live?  Life is such a mystery sometimes.  The family of that guy have also been on my mind as have my own thoughts about what you would do if you were told you only had three weeks to live.  I decided I wouldn’t try and do too much – i’d just want to help the people I love come to terms with it before I left. I don’t know there is all that more I could do.

Life deals some tough blows.



Moon Facebook

October 16, 2012 § 17 Comments

It’s about time we talked about the horror of waking up one day to see you’ve turned into a pig, well sans curly tail, but it’s only a matter of time before the full transformation is complete.

One of the side effects of taking high dose corticosteroids, like prednisolone, for more than a few weeks, is the appearance of ‘moon face’. It’s kind of hard to describe and all you’re going to see of mine is that shadowy image above, but I’ll try to describe it (I know it doesnt look ‘too’ bad in that picture, but that’s why I choose it – don’t want to scare the readers!). Before I start, I should point out the not everyone gets this side effect, there are some lucky b^%&&rds who get away with it.

Your face becomes quite taut. Im not sure if it’s caused by oedema or fat redistribution, but it also feels lumpy in certain areas too, but the lumps come and go, very odd.

I do look a bit like the logo – my cheeks certainly resemble that adorable piggie wig, except I don’t look adorable, I just look weird.

I look (not very often these days) at myself in the mirror and it really doesn’t look like me. Well it sort of does, but sort of doesn’t. A kind of shadow of who I was.

I’m certainly not brave enough to bear all, as a full frontal in this blog post, as Suz did with her ‘Bald as an Ostrich‘ outing of her chemo induced bald head. Anyway, Suz actually looks lovely and people can honestly say to her she looks cool and beautiful. Whereas with the ol’ moon face, really, honestly you can’t, it’s certainly not cool and really NOT attractive.

It can be funny though, I am able to take the mickey out of myself and make people laugh about it. And my friends and family are very kind. They keep saying it looks like it’s going down – it isn’t, but it’s really kind of them to say so.

My niece, a medical student, who has promised to find a cure for dermatomyositis, suggested I take photo of my piggy face every day, to the point where it has eventually gone back to normal (i.e. as my dose of prednisolone tapers, the magic number being under 20mg a day, apparently) . Then make a flick book out of the photos so I can see the transformation. A great idea, but I don’t think I will do it, as once this is over, I really just want to forget it.

On the positive side and you do have to find a positive in things like this, otherwise you’d end up very down indeed. My nose looks much smaller (compared to the expanse of my cheeks) and my skin is very clear and probably the best it’s ever been. Also because of the tautness of the skin, I have no wrinkles whatsoever, wooo hoooo!

Oh and a final idea, how about Moon Facebook. It would allow me to have a current photo up without embarrassment, as it would only allow people with Moon Faces to become a member, we could then moan on about our fat cheeks without any feeling of guilt or shame: Damn, we could even have a competition on who’s cheeks are the biggest.

Feeling Pretty Awful . . . Chemo Saturation Point !!!!!!

October 15, 2012 § 2 Comments

Over the last week I have been feeling pretty ordinary.  I feel like I have reached saturation point with the chemo and drugs – and just feel sick most of the time.  I feel sick in my stomach and in my head – this funny sicky headache thing.

When I started down this track  they warned me that the last three chemo doses are likely to  be more difficult than the first few.  And they are right.   I take the anti-nausea tablets and I guess they work for a while but I wake up each day with the same awful sick feeling.  There isn’t much I feel like eating – so that’s a struggle.  The metallic taste has come back with vengeance.  I thought that by drinking heaps and heaps of fluid that I might avoid it, but alas not.  I just end up nauseous, feel like I’m eating metal and get up all night to go to the toilet.

After dose four I am also finding that my bones are aching.  I was warned this might also happen but until the last dose of chemo I have, thankfully, managed to avoid it.

I’m also having lots of weird dreams – they seem very vivid at the time but I never seem to remember the details when I get up.

So I guess this is how things are meant to be – no point complaining.  Just get on with it !!!!

Be a good girl and take your medicine

September 4, 2012 § 9 Comments

I’m not a medical professional, but I’m making the comments here from bitter experience. Once you get on the drugs carousel, it’s hard to get off and by god, that carousel spins you round until you’re dizzy.

I would love to try an alternative to hard core, toxic drugs. People spout the diet route and ‘herbs’. But when I got on this carousel, I was in a very, very bad way. My partner, normally a very optimistic (to the point of being highly annoying) person, said to me that if I’d waited much longer for a diagnosis and treatment, he couldn’t see me getting through it. And…at that time I was on a gluten free, autoimmune diet, just for my IBS. So the drugs may be awful, but the alternative is worse.

So, for your interest and delight, this is my drug regime and my ‘observations’ and associated effects from scans and tests done so far, that the drugs have had on me. It’s scary, but not at all unusual, in fact, Im fairly sure this is par for the course.

Here we go:

Prednisolone (prednisone): Started on 50mg daily for 6 weeks tapering down, currently on 30mg daily

Used to reduce inflammation, suppress immune system

 What its done to me:

  • Swollen face (moon face or face as I prefer to call it)
  • Swollen lump above right clavicle (jury out on if this due to steroid)
  • Blurred vision
  • Osteopenia of the hips
  • Sleep disturbances
  • Stomach pain and general indigestion

What I then have to take to counter its effects on the density of my bone calcium:

Aludrenic acid   a biphosphonate which can cause oesophageal cancer. It’s a pain to take as needs to be taken with lots of water and you can’t lie down for 2 hours after taking it.

Natecal (Calcium/Vit D)    chewy delight

More on the above two treatments for osteoporosis prevention can be found by clicking here

Lansoprazole  a proton pump inhibitor to prevent reflux and stomach pain caused by the steroid.

Methotrexate (how I hate this drug): Started on 10mg tapered up to 20mg maintenance dose)

Used to suppress the immune system and as a steroid sparing drug to allow the reduction of the steroid dose

What it does to me:

  • Has affected my immune system as expected, e.g. low lymphocyte readings, etc.
  • Causes nausea for up to 3 days after taking – it can be mild to severe, I’m hoping go grow to tolerate it more
  • Extreme tiredness the day after taking it (I take it in the evening and sleep through some of the effects)
  • Headaches for two days after taking
  • Thinning of hair
  • Metallic taste in mouth
  • Night sweats the evening I take it
  • Sometimes breathing difficulties the evening I take it (jury is out on if this is the cause)

What I then have to take to counter / check the effects of the methotrexate

I have been having weekly blood tests to check for liver/kidney function and immune system suppression/ infection – thankfully in a few weeks they’ll be monthly.

I also take folic acid (5mg) the day after taking the methotrexate to counter the side effects. More information on the action of folic acid on methotrexate can be found by clicking here.

I am also on a high dose Vitamin D treatment as I have very low levels and most recently I’ve been taking doxycycline (an antibiotic) to see if the swelling above my clavicle is an infection.

I’m on this ride now and I am too scared to come off it because the disease itself is pretty frightening too and I know without these drugs it would engulf me, as it was before I went on them.

Tara THANKYOU! For making laughter the best medicine

August 28, 2012 § 17 Comments


Today, I awoke to find a large, soft, round swelling, just above my clavicle. It scared the bejesus out of me, I can tell you. I just thought, oh no, dear god what is this now.

Anyway, I was quite upset and down about it. I made an appointment to see a doctor this afternoon to get it checked out. Just to make sure I was suitably stressed and worried, I did some internet research, looking for possible connections between the drugs I’m on (methotrexate and prednisolone) and swellings in that area. All I found was that is was either, an infection, hypothyroidism, or a tumour: I opted for the infection as my problem of choice.

Anyway, suitably worried I went to the doctors and waited in the very quiet, British waiting room.

A bit of background… Brits are, by nature, a quiet and conservative lot (in public anyway, I can’t vouch for that behind closed doors): Laughing out loud in public places is considered treason and punishable by death – her majesty herself carrying out the beheading*.

Anyway, there I was worried frown lines on my brow and I texted my good friend Tara to describe what I had and for some tea and sympathy.

A total deadpan text was then received by me, from Tara saying:

“Is it possible it’s a marshmallow?”


I tell you, I nearly wet myself laughing and trying to hold the laughter in, as a million sitcom type scenarios played in my mind of me asking the Doctor:

“Doctor, is it possible it’s a marshmallow?”

I’m still laughing now.

I admit, some of you might not get this as it seems a very British joke, as it’s a bit of a surreal situation. But the combination of the stress of this new symptom, with the deathly silence of the waiting room and peoples glum faces and receiving that text was just what the doctor ordered and it cheered me up no end.

So to Tara, for being bloody funny at exactly the right moment – thankyou!

p.s. Tara and her husband have written a brilliant book for new parents called Commando Dad, check it out.

p.p.s. Its likely not a marshmallow, although they are thinking of carrying out a toast test. It is most likely a side effect of the prednisolone, but the GP is talking to my consultant about it tomorrow, so I’ll update you when I know more.

* This is a joke by the way, we stopped beheading people years ago – well, mostly..

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