A Picture Speaks aThousand Words.

Christmas 2011 - TARGET MET!


Grandchildren Ethan and Lilah
Sons Jon and Tim
Daughter-in-laws Gaby and Anna


Tess x

A blip and Happy Christmas

Bit of a blip this week. Had to call my gp on Tuesday. Getting a chest infection whilst on chemo is not the cleverest thing I have ever done!!! My rib muscles and diaphragm are so sore from all the coughing – but the antibiotics are kicking  in . So no trial treatment this week and chemo will not go ahead next week.

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Well 2011 has been a bit of a roller coaster year for us. Last Christmas if you remember I was going through chemotherapy and we were celebrating the birth of our first grandchild Ethan and the news that we would be having a second grandchild in Canada later in the year. What a boost for us both.

The chemo was successful and bought me some time. We had a great week in Colaton Raleigh in Devon at Easter with Jon, Gaby & Ethan. Another holiday to Menaggio, Lake Como then followed in May to chill out after the treatments. We managed several trips – the highlight being the Bernina Express through the Alps.

Our granddaughter arrived in June – Lilah Thorun – and we were over the moon. Grandchildren, are a bit like buses - you wait ages for one and then you get 2 within 8 months!

In July Alan & I celebrated our 40^th wedding anniversary – we celebrated in style with a lovely meal at the Ashdown Park Hotel in Surrey.

In  late August we went to Canada to meet Lilah (and mum & dad!). Jon, Gaby & Ethan came too so we really had the holiday of a lifetime. Still get very emotional thinking about it.

We spent a couple of days with Tim, Anna & Lilah in Toronto then when the others arrived we rented a house on Gul River in the Kawarthas. Finally we spent some time catching up with Canadian culture and history in Ottawa.

We have also managed a couple of weekends in France and Belgium – which meant the wine/beer stocks could be topped up!

Medical tests continued and the news we did not want to hear was that my cancer was once more progressing. I had hoped for a longer spell of remission but it is no help to dwell on these things.

So I am now in the middle of a second chemotherapy regime and I am taking part in a new drug trial at Maidstone hospital. It is a double blind trial so I don’t know if I am receiving the drug or a placebo but at least I have the chemo as a backup. This does require a lot of travelling (hospitals twice a week) but if the results are positive then it will be worth it.

So from Alan & myself we wish you and yours a very Merry Christmas and a Happy & Healthy 2012. We will be spending Christmas with our 2 wonderful grandchildren and their mums and dads, my brother and partner and daughter. Tim, Anna and Lilah arrive on 24^th Dec. Thank you so much for your support this year – knowing you are there has made a difference.

With love

                                               Tess &Alan xx

Why am I doing this?

I was asked this last week - relating to the drug trial
Why am I doing this? Grasping at any treatment on offer even if it may be a placebo drug?
In the hope that it will not be the placebo and make things better.
In truth the best outcome will be to buy a bit of time.
Who knows how long this time might be? So why am I doing it?

I look at Alan
So big, so strong, comforting and caring.
Making sure everything is there for me.
So sad, so fragile - who is supporting him?
Need to keep on 'keeping on' - Alan needs me. We will journey on together.

I look at my grandchildren.
So new and perfect.
So much to learn about this funny old world.
So much to discover.
They have been a the main focus for Alan & I over this last year.
Need to keep on 'keepin on' - Ethan and Lilah need their Nana. We will journey on together.

I look at my boys.
Gentlemen now - so strong and manly, husbands and fathers too. Beautiful wives and children.
We gave them wings that they might fly and they have made us so proud.
They need me to keep them grounded and I need to see more of their story,
Need to keep on 'keepin on' - Jon and Tim still need their mum. We will journey on together.

I look at my wider family and friends.
I have been overwhelmed by their love and support
The letters, cards, emails, blog entries, daily jokes, small unexpected gifts, visits, social network messages, forum messgaes etc.
Need to keep on 'keepin on' - My friends need me to be there for them when they need supporting too and I need them to keep me sane!.  We will journey on together.

So that is why. With uncertainty comes hope.

Tess xx

PS Wish I could get that yoga position right - a target -maybe not!

Targets met, target set and to friendship

We are just back from a great weekend in London. Catching up with friends, some old and some new.

On Saturday we met up with Janice & Tony. Janice is my ‘oldest’ friend. We first met 51 years ago when we started secondary school. They now live in Stokesley  but were in London for the weekend. We had a drink first and then a lovely dinner in The Latium in Berners Street – off Oxford Street. Well worth a visit if are in that area. We stayed the night in the Radisson Edwardian Hotel in Tottenham Court Road. We were able to do a bit of Christmas shopping and a made a visit to our favourite Indian sweet shop Ambala. Target met.

On Sunday we made our way to Enfield for the Enfield Classical Guitar Society’s Christmas lunch. Alan used to play with this group when we lived in Enfield. What a great meal we had. Lots of laughter and friendly banter and bad jokes! Thanks Jacky, Bernard and Ray for your cooking. It was good to catch up with old friends Bernard & Margaret, Richard, Valerie, Simon, Morgan and to meet Sue and Pauline – I hope they know what they getting into!. Good luck to them for Christmas concert next week – perhaps if they leave the wine tasting until after the concert rather than during they may play well! Love you all. Target met.

We then moved on to more friends in Palmers Green – Tony & Roz. Yet more food and more wine consumed and as always good chat (a lot football related) and music. We stayed the night with them (– thanks Roz for 2 duvets – was sooo cosy)  before catching the high speed train back to Margate this afternoon. Target met.

Planning now to do another London weekend in January. Target set

So I am trying to live according to the Petal philosophy. It would be so easy to find a reason not to do something – the weather might be bad, the trains might not run, I might not feel well, it will be expensive etc. With all the love and support I feel around me all things are possible.

So I will finish with a few of my favourite quotes in celebration of friendship:

"A friend is someone who knows the song in your heart, and can sing it back to you when you have forgotten the words."

"A hug is worth a thousand words. A friend is worth more."

"The making of friends, who are real friends, is the best token we have of a man's success in life."

Love you all. Tess xx

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

Milestone, Sally and the journey

Well another birthday enjoyed and a another target met! We went to E.Sussex for a couple of days away. We visited Bodiam Castle – beautiful, Battle Abbey – a pleasant surprise, and Sedlescombe Vineyard where we purchased a few bottles of organic English wine. We also bought some famous Battle bangers!

We now have Sally the Sat Nav to guide us on our journeys. She speaks very gently and makes a happy sound to inform Alan when he needs to slow down. This works so much better than me shouting ‘Alan slow down’! But Sally does sometimes get it wrong like ‘continue forward’ when all you can see is a brick wall! The best bit is ‘Make a U-turn when convenient’. We had a couple of those instructions on our way home from Sussex to Kent and we found ourselves on a long, narrow country lanes which twisted and turned and we appeared to be in the middle of nowhere but we caught up with ourselves after  a few miles and back on the route we recognised.

That made me think that life is a bit like that journey. You are tootling along quite nicely doing OK then suddenly out of the blue something happens that knocks you off course and that can be very confusing and frightening. But given time and corrective treatment you can eventually get back on track. Well I am about to embark on one of those ‘not quite sure where this will lead’ kind of journeys as I prepare myself for the next round of chemo and the drug trial. I feel positive that Alan and I will get to end of that particular journey safely albeit with a few wobbles along the way.

As much as I love Sally I wish she would say ‘roundabout’ properly – she says it as if it is two words with the emphasis on ‘about’ .

Thanks for popping by today. Tess x