Blogs are for . . . 3.30 am in the morning…..

August 31, 2012 § 3 Comments

SUZBlogs are for 3.30 in the morning when you can’t sleep and can’t stop thinking about all the other things on your mind.  Don’t think I have told you about my 18 year anorexic daughter – totally beautiful, clever, articulate, social and politically conscious, generous, kind girl with the world at her feet with such an insidious illness that I wonder if she will ever have a proper life or be really truly happy.  How can I afford to be ill when all I worry about is if she is going to get through the next week, month, year – this year??  This last week has been a bad one with me nauseous because of the chemo and her with some gastric virus.  And while I have bragged about being to be able to at least eat toast myself – it’s hard not to feel guilty by the poor example I’m giving when I know she MUST eat.  She is as thin as a stick – literally.  Despite every effort of intervention over the last 12 – 18 months, it seems like we are still on a race to the bottom.  I know it isn’t her fault – the illness is insidiously calculating in how it manipulates the mind and bodies of beautiful young girls like my daughter’s, but it is hard not to feel angry with absolute frustration that there seems so little that I can do that has any difference.  I can’t afford to be sick . . . we are on a slippery slope to no where decent.

It’s nearly 4.00 in the morning and I haven’t been able to sleep – for three hours now.  I’m feeling OK, not sick just sick with worry about the waste of it all. Even when I get through this myself – that issue is still going to be there.  The light at the end of the tunnel is looking pretty dim at present.

Lessons From Day Four

August 31, 2012 § 2 Comments

I am seriously technically challenged !!! -Wrote this blog earlier and then lost it – so here’s hoping I do a better job second time round.

Day Four (yesterday) started well.  Woke up early and pretty refreshed. Did a few jobs around the house, walked the dogs, wrote a blog, checked and responded to emails, dropped in to see a girlfriend and had coffee with another friend – all before 12.00pm.  Even managed a latte – yippee !!!!   Had some lunch and then settled into writing a response to a Business Tax Discussion paper defending the position of R&D Tax Incentives at the expense of broad brush business tax cuts.  Ended up feeling pretty pleased with my efforts – the brain cells still working despite the chemo drugs (HAZCHEM !!).  Predictably though by the end of the day I literally felt ‘spent’ and sick.  Managed dinner, watch one of those Jamie Oliver Meals in 30 Minutes shows (God that guy makes food look fantastic, easy to cook and delicious to eat) and went to bed – 8.30 – early but not too bad.   Lesson from Day Four – pace yourself Suz !!!!  have to admit this is not something I find comes natural.  Having been used to a busy, energetic action packed life for so many years, I sort of feel like a fraud when I’m not filling my time with doing something – clearly the something these days has to be downsized, down packaged, down energised or something along those lines.

Day Five (from the first day of Treatment) – woke up with a Day Four Hang Over.  Didn’t sleep much and used the non-sleeping time to think about all the other issues I have to worry about (that’s another story).  Spent a lot of the night coughing and have sore ribs from the coughing and wheezing (I thought the steroids were suppose to stop the shortness of breath).  In any case the energy an enthusiasm from Day Four had quickly dissipated into lethargy and nausea and this sick head feeling that can only be described as ‘nauseous head syndrome’ – a mix of headache and sick in the stomach feeling but in my head.

Thankfully have since managed to take some mild drugs for the head and have some lunch – and pleased to say feeling a bit better.  Also managed a cup of coffee this afternoon – for some reason off my usually preferred home brewed tea.  Who knows how to account for these sorts of changes in taste preferences ???  My girlfriend would like to catch up for a drink after work today (lemonade for me I think) – which also sounds good to me BUT . . . in the spirit of yesterdays lesson…………….. need to pace myself.  I’ll and see how things are going in a couple of hours and hopefully I’ll feel up to it.  I get the lesson stuff – but also keen to make sure I do things when I’m not feeling too bad.  There will be plenty of crappy days for sure, so hoping to use the not so bad ones to good advantage when I can.

Keep posted……………….

Suz – pacing herself …...

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Oh Yes, I’m Back! Walk On Baby!

August 30, 2012 § 4 Comments

Happy Walking Boots

Oh yes, you spoilt selfish well people you, I’m back.

I walked to the end of my road and back again, at pace…no less!

Read and weep, I’ll be back, oh yes I will.

Actually Im a bit knackered now, but it’s a good place to be.

Of course this is all down to my upped dose of prednisolone (prednisone in the US). I know I can’t stay on this dose and I know at some point I have to go back down, but for now, I’m making the most of my sudden energy.

Update on the marshmallow situation: The doctors think the swelling above the clavicle is most likely down to infection and they’ve put me on doxycycline. So we will see. Overnight the marshmallow has increased in size and now extends to the lymph nodes under my chin too, but hey ho, I had a load of CT scans and breast screening done in early June, so I feel quite comfortable it isn’t anything sinister.

Suz – Pre Cancer or maybe just as it was ‘percolating’

August 29, 2012 § Leave a comment

Suz

Just so you know what I look like – pre cancer !!!

Suz: HAZCHEM

August 29, 2012 § 1 Comment

First of all to put all this in context I have been diagnosed with Non Hodgkins Lymphoma.  I have lymph nodes lighting up all sites in my body with big external lumps in my left groin – and more presenting in my right.  Earlier in the year the glands in my neck were enlarged but after two needle  biopsies some how managed to disappear – personally I think it is because they tried to suck them out through the needle.   My cancer is rates as stage 3/4 – ie multiple locations, both sides sides of my diaphragm.  I have had a bone marrow biopsy which showed some irregularities but currently (and thankfully) too small to be definitively identified as cancerous.  In terms of the ‘grade’ of the illness, ie low or high grade with high grade being aggressive and curable and low grade slow growing, treatable and ‘less’ curable, my diagnosis is that I appear to have characteristics of both – follicular and large cell cancer cells.  All this is to say that the treatment program is ‘aggressive’ with an all out effort to eliminate the disease.   Having said all this, I am also pleased to say that the prognosis is good – in fact probably great given that when it was first suggested I had cancer the prognosis was for ‘palliative chemotherapy’.  So in the scheme of things, all that I have heard since is positively positive!!!!!

So after finally having all the tests – at least 5 different needle biopsies, a core biopsy on the groin nodes and finally a surgical biopsy to remove a whole node for tissue testing – plus of course, all the other CT, PET etc scans  – treatment finally kicked in this week.

HAZCHEM – that’s exactly how I feel in terms of all the drugs that have been fed into my system this week.

Here we go:

  • Rituximad
  • Cyclophosphamide
  • Vincristine
  • Doxorubicin
  • Prednisolone
  • Pregfilgrastim

The first treatment required  – over a two day period – around 9 hours of intravenous drug feeds, so pretty heavy going.

Day One was pretty good.  Really didn’t feel too bad after that at all.  It was just the Rituximad and thankfully I had no reactions.

Day Two was the heavy chemo stuff.  I pretty much felt like I was literally ‘glowing’ from the drugs – not in terms of looking great but simply because of the toxicity of the drugs.  That afternoon, not surprisingly, I felt very light and woozy in the head and quite nauseous.  I love my cups of tea but to be honest couldn’t even face up to one – the thought even made me feel sick. Toast and vegimite (stable for many Aussie’s) was about all I could stomach. I went to bed with a headache but after taking some headache tablets managed to actually get a good nights sleep.

Day Three – yesterday – I woke up feeling much better than I expected.  In fact started to feel like a bit of a fraud getting all this attention for being ill but actually feeling not too bad.  Thankfully the day wasn’t too bad at all – just tired and a bit nauseous as the day progressed.  I actually managed some rice with some spinach for dinner which tasted especially satisfying after the staple of toast the previous days.  During the day I had to return to the hospital for the pregfilgrastim injection  – in my stomach and which hurt like hell for some reason.  I used to have a really high pain threshold but after all the biopsies I’ve had with no anaesthetic, I find I now have no tolerance for pain at all !!!!!!!!!

So today – feeling OK so far.  Woke up and got up early.  Thought I was hungry until it actually came to preparing breakfast  – in the end toast again.  I’m not complaining it’s better than nothing and its not like I’m vomiting or anything.  It is just this underlying nausea that turns you off wanting to eat too much. Having said that it is something I am going to have to watch  – I have already lost quite a bit of weight and can’t afford to lose anymore. In any case I have this fantastic wardrobe of clothes that I have to make sure I can still wear.  It is a great collection of beautiful pieces that I have collected over time and that I have no intention of throwing out – so the goal, which is a good one, is to make sure I regain the weight to make sure I still get to wear them.  I’ll tell you about my clothes another time – the one thing I have spent my money on.  I love being a fashionista, mind you it is a bit of a struggle at present.

Let’s see how todays pans out………………………..stay tuned

 

An update on chemo Suz

August 29, 2012 § 4 Comments

Suz has been having her first chemo this week and while she’s recovering from that I thought I’d update you on how she’s doing.

Her first day was more of an ‘Introduction to Chemo’ or’ Beginners Guide to Chemo’ or even, ‘Chemo for Dummies’ – now there’s a book that needs to be written. So it wasnt too bad. A few hours of being hooked up to some evil poison and hey, ho, there you go.

But her second day was really the hard stuff, the, ‘Chemo Advanced Course: Hard Core Chemo’. All day hooked up and an evening spent feeling very sick and unable to eat anything but toast – good old toast.

Tomorrow she has to go for an injection to stimulate growth of white blood cells and hopefully she’ll get some respite until the next round.

In the meantime, the fashionista that she is, she has bought a load of lovely hats for when she (temporarily) looses her beautiful  golden curly locks – here’s a preview:

Suz, looking chemo cool in her hat

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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