December 1, 2012 § 16 Comments
So, here I am, drugged up to he eyeballs on immuno-supressant drugs (AKA prednisolone and methotrexate) and I get a cold.
Immediately I am panicked: Visions of it turning into pneumonia and me spending Christmas in hospital.
I slept for around 20 hours on day 1. Day 2 I slept for about 12 hours. Day 3 I’m better.
What on earth!
My partner, who kindly gave me the cold in the first place, is still, nearly two weeks later, coughing and spluttering with the thing. And yet, here I am, no cold, having fought it off, god knows how, because my blood tests (which I have to get regularly while on methotrexate) show, for example, my leucocytes (which fight off disease) are low.
So there you go, a cure for the common cold, immuno-suppresants..
November 19, 2012 § 19 Comments
I was started on 50mg a day of the corticosteroid, prednisolone when I was first diagnosed with dermatomyositis in early June of his year. Well of course, I can’t stay on that dose for too long because of side effects such as osteoporosis. So since around late August I’ve been tapering the dose and factoring in the steroid sparing drug, methotrexate. It has worked pretty well. My disease is in remission because of those drugs.
So here I am, nearly 6 months into taking prednisolone. It has had it’s ups and downs; It has gotten the disease under control, but it has made me look like an advert for moonpig.com with a big round moon face. I’ve put on over 2 stone in weight. It has given me stomach pains. I’ve got osteopenia in my hips. I’ve had heart palpitations and tachycardia because of the steroid. My sleep patterns have been adversely affected. At one point I was also borderline diabetic, but got that under control through dietary changes. My once excellent long vision, is now very blurred. I have lumps and bumps in the strangest of places. It has also left me prone to infections, which, so far, touch wood, Ive managed to avoid.
On the plus side, I’ve felt pretty happy. Steroids like prednisolone are mood elevators and for the past 6 months, considering I’ve had a pretty awful illness, I’ve been a happy, chirpy girl. Until now that is…
This week I’ve tapered down to 20 mg one day, 0 mg the next. Suddenly my mood isn’t so positive and the dark has set in. I feel lost and angry about my life and how it has turned out. I feel like I’m the worlds biggest underachiever. I’ve got to get out of this funk and think how fantastic it is that I’m now on an average of 10mg of prednisolone a day after being on 50 for so long. I’ve got to keep that positivity and remember how I felt when I thought that this disease might take me, but it hasn’t. It isn’t easy though, when you look in the mirror and you hardly recognise yourself from a year ago. How do those positive people, keep so positive?
October 31, 2012 § 4 Comments
Only earlier today I was telling someone that I was feeling good and that my mouth had cleared up – certainly compared to a couple of weeks ago. Well once again I spoke too soon. After dinner tonight my teeth were aching, my gums literally throbbing and by tongue burning. I immediately did the mouth wash routine I have to do but even now – over 3 hours later, it is still hurting and feeling raw. I have to say that of all the chemo side effects this is the one that I hate the most – that, and the metallic taste. It really puts you off your food and even when you think you are having something nice to eat, it still tastes like metal !!!!!!!
On a happier note I saw my haematologist today. She is such a great lady – both a great clinician as well as caring. I feel very privileged to have struck the jackpot in having her on my side. Anyway, she says I am going really well – although she did say I have the look of someone battered about by five doses of heavy duty chemo treatment (seems make up can hide only so much !!). We are now getting to the point where we are starting to arrange the post chemo PET scan to see how the treatment has worked. There is every reason to believe all is on track – but I guess we will only know for sure once the tests are done. She was showing me all the results from my bloods – and the cumulative affect of the chemo. It really brought home to me just how much it knocks the system around and how dramatic the changes are over the life of the chemotherapy. Little wonder it takes a good six months or so to get your body back into decent condition after the therapy finishes. I just feel very lucky that my body has held up pretty well. So I guess at the end of the day – I shouldn’t be wishing for too much. After all I have been pretty lucky.
October 29, 2012 § 7 Comments
Spoke a little too soon the other day….wouldn’t you know it. Metallic taste has come back with vengeance, bones were achy over the weekend, and the usual tiredness set in. Oh well, only one more chemo to go hopefully. I still feel grateful that I have managed the chemo pretty well. I went for a walk today and realised just how unfit I am at present – but I guess that goes with the turf at the moment. Next challenge will be taking the next steps to get on with my life – now there’s another challenge !!!!!
October 22, 2012 § 4 Comments
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.
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.
October 19, 2012 § 2 Comments
I went to the specialist dermatomyositis clinic at the Royal Victoria Infirmary the other day. I am incredibly lucky to have a specialist clinic, so close to where I live for such a rare disease. It is probably because my neurologist has a special interest in myositis: Whatever, I feel quite lucky.
And with dermatomyo-shite-is you get two for the price of one, so I see both a neurologist and a dermatologist. The dermatologist checks out my skin for any signs that the derma part of the disease, i.e. the rash, is causing any trouble. Fortunately for me it is almost gone, apart from some faint traces of it still visible on my hands: Apparently, the hand rash is usually the last to go.
The neurologist tests my muscle strength and also decides upon any changes to current treatment. And it’s the neurologist (bless his cottons) that has decided to taper the prednisolone, so I now have, 30mg one day and 0mg the next.
I actually shouted “YIKESY!!!”, when he announced I would be taking 0mg every other day, at which he exclaimed, “why yikesy?” To which I said “because it’s scary…MAN!”.
Anyway, Ive been on this regime for a few days and I can report that I seem to be getting a delayed effect. On the day I take 0mg prednisolone I am actually not too bad, but the next day, urgh, Im incredibly tired, have more significant pain and feel nauseated – pretty bad when my sister in law made the most amazing vegetarian, gluten free, trifle for us, which I have named ‘The Trifle of Delight’ as it looks so good.
However, I will persevere. It’s not like the last time where I was incredibly ill and had to go back up to the higher dose, that must be a sign I’m improving too. The good thing about this dosage is that it is under the magic number of 20mg a day (averaged) so I’m hopeful some of the side effects of the steroid will abate, in fact the neurologist said some of them should, not all, but some – let’s hope that means bye bye Moon Face.