A holiday before the holidays

December 23, 2012 § 2 Comments

I’ve just had a little holiday break after my treatment.  You don’t realize how fantastic a holiday is and how much you need it until you take it !!! Even though the last few months have not involved much hard work, the ability to just get away and change the routine is itself refreshingly therapeutic.  While of course not much happens when you are  unwell, I never felt quite comfortable  doing nothing – not being pre-occupied with something ‘meaningful’.  For some reason being on holiday gives you permission to escape from all the things you usually worry about.  If nothing else – this is why holidays are a MUST !!!!  Let’s face it, the worries will be waiting when you get back (as I have found out all too quickly).  We really need to stop being so hard on ourselves.

Anyway my list of the ten best things about holidays:

  1. Eating fresh fish and chips
  2. Being anonymous
  3. You can’t get an internet connection
  4. It doesn’t matter what the weather is – you can relax whatever happens
  5. Reading the papers – from front to back over more than one day
  6. Going out for breakfast
  7. Walking along the beach
  8. Slowing down – literally !!!!
  9. Going to bed late
  10. 10. Not having to clean the house

By the way – am still bald !!!!!


Something I Remember From Last Week That Made A Difference

October 25, 2012 § 4 Comments

I meant to write about this last week, but with my usual chemo brain I forgot !!!

I was having a really great coffee in a little cafe in town and on my way out heard someone call my name and say hello.  I have to admit I had no idea who it was but said ‘hi’ and obviously looked sufficiently dopey and vague for them to remind me of who they were.  Well even that didn’t click immediately but we started a short conversation – with me madly trying to remember who this person was.  Thankfully it finally dawned on me, but not until they reminded me that I gave them their first permanent job some 21 years ago.  And so now I remembered.  He went on to remind me that he was just out of school at the time and was engaged in the organisation I was in as a very young trainee.  On reflection I remembered him as a really nice, friendly, motivated guy and yes did recall helping him out with a job for all those reasons.  Anyway in the course of the brief conversation he went on to  tell me that he is now doing consulting work in the IT industry, earning an excellent executive salary.  He concluded the conversation thanking me for helping him on his way – in fact said that that was the important break in terms of getting him on track for a decent career in the IT industry.  I felt very proud and very humbled.

Why is this story so important?  Well for me its important because it reminded me that despite the ups and downs of this year (of which there have been plenty), that I have made a difference that counts to someone.  For me it was a reminder to look at the good things that happen rather than the things that are bad or don’t work out.  It made me realise that the impacts we have we may not realise until years later or may never even know at all – but notwithstanding that, the impact has been made and someone has been touched.  It was a sobering conversation at a time when I am thinking abut my future.   I think we all have these moments. This is the one I am sharing with you.



NEVER…in a million years!

October 23, 2012 § 13 Comments

Flowers from my garden, that I used to be able to tend, but haven’t for the last year…Next year I WILL be able to

When I was in the hospital the other day, I was looking around at all the obviously ill people, and I thought, dear god I would


have thought I’d become one of them, one of those ill people, people who look ill and weak, who hobble along because they are in pain, or have weakened muscles, or have tubes coming out of their noses, etc.

But I have, I’m one of those ‘ill people’ you see on hospital visits: Sometimes the whole horrible episode just HITS  you!

Then, the other morning, just for a couple of hours, I could almost taste better. It was like a brief glimpse at what I was, before…this ‘thing’ hit me, this alien thing, this disease, this interloper. It is not me, it is not who I am, but it feels sometimes that I am becoming it.

I have had symptoms for almost a year now and been very unwell since late April, which seems such a long time, but now I’m ready for better please.

Bring it on, enough is enough.

…Watch out non sickos…if it can happen to me, non smoker, fit and healthy, 30 years vegetarian…it can happen to you

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.



Grieving for the loss of your health, through music

September 2, 2012 § 6 Comments

When my mother died, I couldn’t listen to music for a while, I don’t know why. I just couldn’t bear to. Somewhere inside of me I must associate music with happiness and it seems wrong to grieve and listen to music.

When I was diagnosed with dermatomyo-shite-is (dermatomyositis) the same thing happened. This time though, it happened with a twist. I still couldn’t bear to listen to music, but instead I had a song that played over, and over and over again in my head, day, noon and night and that song was the most obscure and strange song I could imagine. It was a song from the album ‘Hunky Dory’, by David Bowie. A song right at the end of the album, an afterthought almost, called ‘8 Line Poem’.

Why, oh why, did these words run through my head:

“The tactful cactus by your window
Surveys the prairie of your room
The mobile spins to its collision
Clara puts her head between her paws
They’ve opened shops down West side

Will all the cacti find a home
But the key to the city
Is in the sun
that pins
the branches to the sky”

Those words have stopped their incessant haunting of me, thankfully. Drove me mad there for a bit, but gone now, mostly anyway.

Making a Meal of It

August 28, 2012 § 2 Comments

When I first was diagnosed with dermatomyositis, a few friends mentioned diet to me. I’ve always been quite diet aware as I was a vegetarian for 30 years – you’ll see why I say, ‘was’, soon.

The NHS are wonderful in many ways, but holistic advise isn’t really forthcoming for a lot of diseases, this being one of them. If you have coeliac and often for cancer sufferers, you will get offered the advise of a dietician, but in this case, it wasn’t seen as connected.

It seems that the connection between autoimmune disease and diet is highly contentious in fact, I think more so in the UK than in the USA, but I’ll explore this in another post.

So, in the end I paid for a private consultation with a dietician – fortunate for me that I could afford to do this, not everyone can. It cost me £40 per session and I had 2 sessions, by Sykpe, as the dietician is based in London. Isn’t Skype video a wonderful thing.

Fleur, the dietician, wanted me to eat meat to help with my muscle replacement after the effects of dermatomyositis: I just can’t. I became a vegetarian as a quiet protest against the mistreatment of animals in factory farms, not for health reasons, so I just couldn’t bring myself to change that philosophy. After much debate, I agreed to eat fish. So with that in mind, she gave me this advise:

1. Eat eggs and fish every day

2. Eat root vegetables as much as possible, for example beetroot, carrots, parsnips, etc.

3. Eat green leafy vegetables as much as possible

4. Cut out Gluten (I already have, that’s another story)

5. Cut out dairy and lactose (see later)

6. Reduce my eating of grains to a minimum (I admit I like to odd slice of gluten free bread…sorry Fleur!)

7. Eat nuts like walnuts

8. Reduce sugars like sucrose and fructose as much as possible

She also wanted me to take a supplement called Lactoferrin which is found in mothers milk and helps to boost the immune system.

I also have to take high dose vitamin D, prescribed through my doctor, as my vitamin D levels are very low, as well as the usual Natecal (calcium and vitamin D tablets you take to counter the steroid affects on your bones).

I’ve also cut out caffeine as much as possible and alcohol (Waaaaaaaaa!!!!!!)

So how did I get on, 2 months down the line…

Well as Im sure a lot of you know, making dietary changes, especially ones that involve eating healthy stuff is never easy. I did however, give it a go and continue to mostly follow Fleur’s mantra.

I do eat high cocoa solid chocolate and have the odd treat of a small Green and Blacks dark chocolate ice cream, mmmmm chocolate ice cream mmmmmm.

The only one I’m really struggling with is cutting out dairy, because every morning I have a really delicious breakfast which I can’t bear to give up. My breakfast, shown below, is gluten free muesli (well actually  a mix of two different ones) with milk (not much though!) and some organic coconut yogurt, with berries of several types on the top…mmm…mmm…mmm how can i give that up!!!

Mmmmmm Brekkie

I’m actually pretty good at controlling my diet but I have slipped a little bit with the odd slice of gluten free bread – I find it helps with the nausea caused by the methotrexate.

So has it worked?

Well it’s early days: I feel very ill still. But then maybe if I was eating lots of gluten and sugary foods, etc. I’d be a lot worse. I won’t take the risk of exacerbating this illness and so I will persevere, but with the odd fall off the wagon.

How do you do a comparison for an experiment like this? I don’t have a control group to check results against. All I can do is assume this is the best way forward and stick with it. The alternative would be to start eating badly and see what happens  – no thanks!

In the end I can say I eat pretty well, but I am finding this diet expensive. I am in a position where I can afford it, but others would struggle.

I’ll write some more posts on diet and feeding because there are considerations when you have this disease that may not be obvious to dieticians.


I found some lactose fee milk…woohoooooo, so I’m using that instead of the real stuff, it’s fine, it tastes the same.

In the beginning…

August 25, 2012 § 6 Comments

I thought it might be time to let you all know how I ended up in this mess in the first place. It took a while to get here, so bear with me.

About 6 months before I was officially diagnosed I started to get a rash: On my face at first, across my nose and cheeks. Not long afterwards I started to get a disc shaped rash on the right hand side of my belly (that’s stomach for you non northern UK’ers).

It’s probably worth pointing out my lifestyle at this point.

I work in software strategy for a small company and I travel a lot. Mainly in the UK, but also abroad: North America, Europe and Australia. The previous 12 months I’d been to all of those places, several times. The reason I mention it, is because I do wonder if I picked up some virus on a plane, as there is a possibility that the Epstein Barr virus can cause dermatomyositis and I had very swollen glands behind my ears for months that year (I haven’t a clue about medicine, but it’s something I noticed).

After the second rash occurrence happened, I went to the doctors to ask about it. I was told I had Rosacea on the face and given a cream to use. As you can guess, it didn’t help. The send rash on the belly was dismissed as just a little eczema (again various creams didn’t even touch it).

The rash progressed. It started to form a symmetrical pattern on my upper torso. Within a couple of months it had spread to the other side of my belly, mimicking the original almost exactly, then around and up my back, onto my shoulders. It looked very bad, sore too, but it wasn’t particularly sore, or itchy.

Here’s a little look at it (sorry for the gruesome shot)

Quite honestly, the rash wasn’t anything other than a irritation (literally). I went back and forth to the doctors, had various diagnoses including, my jeans rubbing my skin and mites…
The mistake I made was that I was starting to get other symptoms and didn’t connect them to the rash. Shortness of breath and a dry cough came around 4 months after the original rash. Muscle weakness around the same time. I didn’t mention these to the doctors until it became so noticeable that I could hardly walk.
The muscle weakness came on over about a 6 week period. I flew to Australia around 3-4 months after the first rash appeared and about a week after I noticed the hand rash starting – this is one of the diagnostics for dermatomyositis the term used is ‘Grotten’s Papules‘ (you can’t see the cuticles in this image but they show tiny bleeding) – here’s what my hands looked like:
When I got to Australia, the next day I had awful pains in my hips and legs, I could hardly move them. I thought it was just the flight, but, I’d flown business class and quite honestly it’s like a holiday in the sky and I’ve never had that reaction before. Still I just dismissed it and got on with work.
When I got back, within 4 weeks I could hardly walk with joint and muscle pain: I literally hobbled.
My dry cough became more frequent, the pain more intense, the weakness in my legs moved into my arms and finally my neck/head/scalp. But probably, for me anyway, the sheer overwhelming exhaustion was the most awful thing to cope with, I was sleeping up to 18 hours a day. It made work very difficult.
My GP thought it might be Lupus and referred me to a dermatologist.
By the time I got that referral – 6 months after the first signs, I was in a very bad way.
Now this is where the NHS (National Health Service) isn’t so good. When my appointment came though, the earliest I could be seen was 8 weeks later. I knew in my heart, soul and mind that leaving this 8 weeks would be a serious mistake (I just knew this was serious). So, I spent £150 and went as a private patient to see a dermatologist.
The dermatologist took one look at my hands and with a smile of recognition said…”I know what you’ve got…it’s dermatomyositis”…except all I heard was, “I know what you’ve got…its blah, blah, blah, sitis”
Absolute BEST £150 Ive ever spent.
He immediately put me back into the NHS system as a urgent case and within 2 days I was admitted to hospital. And thats another story…where the NHS shines…

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