Target met, Advent and the Trial

Just back from a quick trip across the channel to France for a spot of Christmas shopping. Living in Kent it only takes approx 2 hours to get there. This pre-Christmas trip is something we have done for many years now and means the countdown to Christmas has began. We topped up on beer, wine, chocolates, foie gras, cherries in brandy, dried fruit platters, stollen cake and biscuits – all good healthy fare! There will not be shortage of drinks in the Gully household this Christmas! Target met!

I bought myself an Advent calendar this year! Always had one until the boys were about 30! This year opening those windows is very special and keeps me focussed until the 24^th when I will meet my lovely granddaughter Lilah once more. I ‘see’ Lilah on Skype most weeks and I am amazed at how she is changing and growing so quickly. Sometimes Toronto seems so far away. To be with my two beautiful grandchildren will be wonderful.

The drug trial is continuing. I have now had 3 sessions of drug/placebo and 1 cycle of chemo. I certainly feel as if my body is reacting to something but thankfully the side effects are much more tolerable than my previous chemo. The regime will continue for another 4 weeks after which I will have a scan and be assessed. If the scan shows disease progression I will not continue on the trial. 

Tess x

Hospital Trio

Another week over and this week I have been at 3 different hospitals!

Monday morning found me at Kent and Canterbury Hospital Supportive Therapies unit. I had an Indian head / neck/ shoulder massage – luvverly..... My therapist Elaine thought I was a bit hyper on the steroids so calmed me down with camomile oil. We then went into Canterbury – a pint for Alan in The Foundry pub with its own microbrewery followed by a lovely lunch in Deesons. I even managed a bit of retail therapy before returning home. They were setting up the German Christmas Market which I hope to visit next week.

Tuesday was ‘blood’ day at QEQM hospital Margate. It was a very quick visit so in and out in 20 mins. It was an awful damp, foggy day so after a swift shop in Sainsburys and a mad dash round Marks & Spencers I was glad to get home.

Thursday it was the weekly visit to Maidstone hospital for the trial drug/placebo. Seemed to be a lot of waiting around this time and staff shortages were evident. I have to ring the pharmacy an hour before I arrive so that my ‘drug’ can be made up. However my ‘drug’ still wasn’t ready until 45 minutes after my arrival. Consequently we were late getting out and hit the M20/M2 at rush hour again. Met up with Mavis and Ray – they had been waiting about at the hospital for most of day with one appointment or another. Duly took my chemo when I got home and felt totally exhausted. Finally gave in and went to bed about 9.30.

No more scheduled hospital visits now for 4 days and then we start again with blood taking next Tuesday.

A chill out weekend is planned.

Tess x

Complementary therapies

Tiredness, Thoughts and Tea

Well the steroids have kicked in and resulted in a long wakeful night. Fell off to sleep fine but then woke up about 2 am and lay there wide awake until after 6 am. Tossed and turned a bit with a few hot flushes for company (could this be a second menopause?). So then my brain was in overdrive and thoughts took over. I share some of these thoughts with you:

• ·        My two lovely grandchildren and visualising what they were up to. Ethan I hope was fast asleep and dreaming happy baby dreams and Lilah (in Toronto) would have been getting ready for bed but not quite there so play time I guess. Thought about what little bits and bobs I will get for their Christmas stockings.
• ·        My parents and younger brother – all now sadly deceased. I think of them often these days.
• ·        My illness and trying to make sense of it all. Visualising all the schools I have worked in over the years and trying to pin point where there was asbestos contamination. I have my ideas about this but cannot prove anything but I do often think of my former colleagues and pupils and wonder if any of them are affected by the deathly asbestos disease.
• ·        I wonder too if it would have been better ‘not to know’ the prognosis and just be able to get on with life. Most people don’t know when they will die and get on with life without a thought of it – so why can’t I?
• ·        I think of our shattered retirement hopes and dreams and lives that have been changed.
• ·        I think of my 2 wonderful sons and what fine men they have become – each doing their own thing and both now being daddies and both aided and abetted by the most lovely wives. I am blest to have them in my life.

 

I must have dozed off after that because the next thing I heard was Alan whispering those 3 little words in my ear ‘Cup of tea’? How I love that guy!

A bit of a ramble today – put it down to the medication. Hugs. Tess x

Treatment, Anger and Celine Dion

I finally started my treatments today. The trial drug/placebo duly coursed through my veins – not much reaction apart from a vague odd taste in my throat and a few twinges in my back. These of course could be wishful thinking and imagined! Saw my friend Mavis who is a few weeks ahead of me on this trial – she kept the seat warm for me. What a star that lady is and a big support to me. The staff in the chemo unit were so friendly and genuinely interested in the trial. Karen (research nurse) came and said hello too.  Alan stayed with me as I am a bit of a wuss when it comes to needles. The drive home coincided with rush hour and being driven on unlit motorways is not good for my blood pressure! I took my chemo pills when I got home. So we wait for them to kick in. I will give an update next week.

Have been doing a lot of thinking lately and what I really hate about my cancer is the way it has completely taken over not just my life but that of Alan too. Everything now seems to revolve about hospitals and appointments and treatments and waiting for results and more blood tests and scans and ......

Also for the first time since I met Alan (43 years ago) we are pussy footing around each other and thinking before we speak. I don’t want to say things that can be taken as ‘negative’ and Alan doesn’t want to say anything that I might ‘take the wrong way’. Hate it! I guess we are in our own ways trying to protect each other.

I was listening to Celine Dion in the car coming home. I share with you this song as it was so appropriate for how I felt at the time.

Love doesn't ask why
It speaks from the heart
And never explains
Don't you know that
Love doesn't think twice
It can come all at once
Or whisper from a distance

Love doesn't ask why

Tess x

Trying to make sense of it all

Another Mesowarrior has died this weekend.
Anita Steiner - Rest in Peace sweet lady. You will live on in your beautiful little daughter.
No words.
Tess x

The Best Laid Plans and Tomato Soup

The scheduled chemo/trial due to start tomorrow has been postponed for a week as I have a tummy bug which has layed me low. I am really annoyed and upset with myself. Thanks to those who sent me good luck wishes - I will store them in the 'pot' until next week.  I know this is just another hiccup but it seems a bigger deal than that somehow. I think I just got myself so psyched up and then came down with a bump.
Chef Alan has been under par too but he donned his pinny and made me some tomato soup for lunch (he grew the toms too). It went down a treat.
I will update the blog when my treatment gets underway.
Thanks for being there. Tess x

To Boldly Go.....

I am happy to say I have been accepted on the MolMed trial at Maidstone Hospital.

‘MolMed expands NGR-hTNF trial in US’

PBR Staff Writer Published 26 October 2011

MolMed, a biotechnology company, has expanded the Phase III trial of its investigational anticancer drug NGR-hTNF in malignant pleural mesothelioma, in the US.

NGR-hTNF is a vascular targeting agent belonging to peptide/cytokine complexes, which can selectively target the tumour vasculature.

The randomised, double-blind, placebo-controlled, multicentre Phase III NGR015 trial, will enroll 390 adult patients affected by malignant pleural mesothelioma with disease progressing after standard pemetrexed-based chemotherapy.

The primary endpoint is overall survival, while the secondary endpoints include progression-free survival, disease control rate, safety and patients' quality of life.

The company expects to announce the results in 2013.’

There is a 50:50 chance I will get the drug or the placebo – but that is the chance I will have to take and with the backup of chemo it really is my best option. It will be a difficult journey – 2 hospital visits each week, consultant every third week, scan every 6 weeks, chemo day 1 and 8 of a 21 day cycle....... It is an hours drive each way to Maidstone so long days ahead. Whatever the outcome for me the info gained by the research team will hopefully benefit the next generation of asbestos harmed people.

This regime will all start next Thursday Nov 10^th   so wish me and Alan  luck as we take this step into the unknown – scarey but with uncertainty comes hope.

Tess x