It’s been a while

It’s been a while and I must apologise once again for letting normality get in the way of a good story. Since my last update here I have returned to London for cycle 7. This involved a blood test, ECG and Echo to check the old ticker is still working and the collection of my month’s supply of venetoclax. I did that trip with 50 hours of travelling and 28 hours on the ground and I’m now sitting in the first class lounge at Melbourne Airport about to return for the start of cycle 8. I’m going for a new record of 20 hours in London before I reboard one of Qantas’s ten A380s home to Melbourne. Australia’s flag carrier has been very kind to me once again, and I’m at the front of first class on a points upgrade so travelling in style for the fourth month running which definitely makes it easier. I reach Platinum 1, their highest frequent flyer status after this flight (and it’s only taken me 4 months of flying to get there)…funny that I spent 9 years not leaving Australia and I’m now living this crazy jetset lifestyle.

So what have I been up to over the past 2 months? Well I’ve stepped up the hours I’m working in my new job, moved house, I now have fixed days to pick my children up from school for the first time in their little lives, my Mum has moved in with me (thanks Mum for everything)  and I have definitely started living as if cancer is a distant memory and it really is. Aside from the morning drug call with breakfast, life is completely normal. I’m sitting typing this with a beautiful glass of malbec in front of me and I’ve just had a massage in the spa and feel totally floaty – another glass of red and I won’t need that herbal sleeping tablet the Professor has said I can take to try to alleviate the jetlag. I’ve actually nailed the whole flying thing (touch wood) – last month I arrived back in Melbourne as fresh as a daisy and didn’t have any jetlag whatsoever. The next morning I drove my 9 year old to soccer – the month before I was so delirious I couldn’t drive for 3 days. Maybe it’s because I’m not actually in London long enough to adjust to the timezone there. Whatever it is long may it continue.

This week I have a work conference on Hayman Island in the Whitsundays off the Queensland coast so it’s a very quick turnaround. I arrive lunchtime on Tuesday in London, head straight to Barts for a blood test, ECG and a CT scan, then go off to Covent Garden to have drinks and dinner and drinks with friends then crash the night at one of my besties, Mike’s house. I’ll be collected by Qantas first thing the next day and fly out of Heathrow. I’ll reach Hayman on Friday morning, spend the weekend working before heading back to Melbourne to my babies. I have to say one of my Australian specialists wasn’t too thrilled about the idea of me working but, anyone who knows me well enough knows that it’s better for me to work than to be idle, and I think it’s all helping me to put the health stuff behind me – plus I’m only doing around 20 hours a week so am definitely pacing myself.

There’s been a little publicity this month. The Cancer Research UK ad campaign “Right Now” has been featuring my story in their TV campaign. It made me emotional to watch the filming they did of me again but I have to say, the care with which they have treated me and the children has been astonishing. That was truly one of the scariest days of my life…they filmed the moment with the children just before I took venetoclax for the first time and, even though I’m reassuring them, you can see I’m quietly terrified. They were very careful to make sure we were all happy with the ad and the communication has been fantastic. I’m pleased I agreed to help – they have certainly helped me.

The Leukaemia Foundation in Australia also featured me in their CLL/SLL newsletter – for those interested in the subject this newsletter is an excellent read and well worth signing up for as Nikki Shrimpton does a fantastic job of keeping on top of the latest research and I love her writing.

http://www.leukaemia.org.au/download.cfm?downloadfile=8100FA70-0B6B-11E6-82A1005056B60026&typename=dmFile&fieldname=filename&filename=CLLNews_May16web2.pdf

Patient Power also put some of the interviews they did with Professor Gribben and myself on you tube – if you’re not totally fed up of the sight of me – there’s lots of useful information in those for people considering clinical trials (moreso from him than me!).  There’s a whole series of clips you’ll find if you watch this one.

Even though I didn’t really want to have another CT scan (and actually refused to have it last month) I’m pleased I’ve been persuaded to have it tomorrow. It will hopefully confirm the Bone Marrow Biopsy result that I am in a Complete Remission – oh that’s something else I found out over the past two months (talk about burying the lead story!). At my sickest 81% of my lymphocytes in my bone marrow biopsy were CLL – the bone marrow biopsy undertaken in Melbourne immediately after cycle 6 showed only 0.0345% are now which is a very good CR (you might remember the CT scan after cycle 4 still showed some enlarged lymph nodes and that I had had a Partial Response rather than a CR). I also have a friend on one of my forums who may very well have reached a no detectable disease status after 3 years on venetoclax – it doesn’t matter how long it takes to get there but oh wouldn’t it be great to get there?! Fingers crossed for you Sue.

I think that’s pretty much me up to date. I’ve booked my flights for June and July’s trips but I’m really hoping the sponsor will bring forward the three monthly appointments to then so I don’t have to do the trips in August and September and only have to return to London in October. As much as I love catching up with my London friends, we are heading for the Australian flu season and I’m not looking forward to being on a plane during that. Keep your fingers crossed for me.

2 thoughts on “It’s been a while

  1. Glad to hear your continued good news. I am off to Paris later this week for a CLL Advocacy Network meeting and will be in Copenhagen for EHA. Hope we can reconnect soon. Wishing you the best. Brian

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  2. So delighted to learn of your progress. Because I’m considering a Venetoclax trial, having relapsed after a trial with Idelalisib, I am so appreciative to have your descriptive observations, reactions and comments. They provide hope. May you continue to live your life fully with your beautiful children.

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