63 not out!

Well it has been a funny old week weatherwise - we've had it all, dense fog, sunshine, rain, hailstones, snow, warm temperatures, cold (near freezing) temperatures. What is going on?

Have been out to lunch a fair bit! We had 'rent-a-crowd' to visit. Our friends from Enfield took us out for lunch at the restaurant at Minnis Bay. This was on one of the warm sunny days so we were able to walk on the beach. Lovely to see you Ray, Jacky, Bernard and Harry and thanks for the goodies.

The beach at Minnis Bay

I celebrated my 63rd birthday on Saturday - another target met. I was again taken out to lunch - this time to The Olive Tree in Canterbury - Lebanese cuisine. It was lovely to see Jon, Gaby, Berni & Norma and of course my little man Ethan. Alan has bought a new Smart phone but he had difficulty taking any decent photos so unfortunately I only have one to show.

My house is looking a bit like a flower shop. I had some lovely flowers from 'rent-a-crowd' and a couple of gorgeous bouquets. My granddaughter is such a clever child - organised this all on her own!

Finally more friends visiting from London yesterday. Tony & Roz met us in Canterbury and this time we went to Deesons - a British restaurant! The day was glorious sunshine so we were able to walk in the park before lunch. Thanks guys - lovely to see you both.

So that's it for this week. Just a ham sandwich for lunch today.

On the Meso front - just have a read of this. What a total ignorant prat this guy is. ALL ASBESTOS IS POTENTIALLY LETHAL.

Tess

A good week

We have been away this week in the Cotswolds. The weather was excellent - only used the brolly once. Good to get away from it all. We walked, we talked, we ate and drank well, we achieved targets and made memories. Our little grandson was 2 years old on Friday so the week was ended with a visit and celebration - perfect.

Tewkesbury Abbey

Broadway Tower

Bourton on the Water

We took the train from Cheltenham Racecourse

Cirencester

Our hotel in Broadway - The Lygon Arms

Ethan playing with the music center we bought him - concentration!

Ethan helping Gramps to dig up spuds and carrots

Food For Thought

I was given some interesting figures this week by my oncologist. They have been analysing data relating to mesothelioma patients diagnosed with the disease between 2010 and 2012 in my health authority.

In this time 170 new patients have been diagnosed with pleural meso ( a rare disease????)

Between 40%-60% received  first line chemo and it only worked for approx 25% of these patients.

Of those getting through first line treatment only 17 patients went on to  receive 2^ndline chemo. They have no figures beyond this. Patients may not get to first line chemo because: they are diagnosed too late for treatment; are too unwell to receive treatment; choose not to have chemotherapy treatment; or sadly die before ever getting to the referral stage.

So I am one of those 17 who have experienced two chemo regimes – quite a sobering thought and something to ponder on. The total survival rate will be higher as these figures are only for those who received chemo. I am so lucky to still be here and if there were any lingering doubts about the power of positive thinking and the love and support of family and friends  I doubt no more.

On a lighter note Alan has been doing very well with growing veggies this year. Yesterday he dug up another couple of potato plants and there were some beauties!

If you think the spuds are impressive you would be amazed at his carrots! The pear tree is collapsing under the weight of fruit - its been a very good year. We saw our first squirrel down here this week and it was looking for food to dig up. Alan's culinary offerings continue to help maintain my increase in weight - little by little.

I have been very creative this week – my crafting mojo that has been AWOL for some time has returned. I am making 2 Christmas stockings for the Grandies. Not just any old stockings but appliquéd with beads, sequins and embroidery and of course embellished with their names (thank goodness only 5 letters each). I will take photos when they are finished. 

We had a good meal in the Crown Inn  in Sarre. The only other pub in the village has closed and it was such a shame to see this pub so empty on a Thursday evening. A sign of the times I guess.

Just back from a brisk walk along the prom. We watched the beach huts being removed  and taken into storage until next year – winter has officially arrived!

 Tess x

Autumn Leaves

Well there is definitely a touch of autumn in the air this week. It is my favourite time of year – just love the colours of the trees as they change from green through a myriad of shades of gold red and yellow – beautiful.

I had a scan this week – it was back in May that I had my last one when I was taken off the trial because of disease progression. So as you would imagine it has been an anxious time knowing that a negative outcome would probably mean yet a third Christmas on chemo. I saw Jeremy Steele at St Barts on Friday who talked me through my recent scan and said he did not recommend any further chemo at this time as there was little change since May! Phew! We then talked about this and that (family, house renovations (his) how we are managing the chest drain etc ) -no wonder his appointments are always running late but he wished us a Happy Christmas and said I’ll see you again in the New Year!

We stayed up in London on Friday. Our son now has a flat in Greenwich so we took advantage of it. On Friday evening we met up with Bernie & Norma in The Old Brewery located in the Old Naval College. We then had a curry in The Mogul. I can recommend the red snapper and was pleased Alan packed a spare shirt (can’t take him anywhere!) A good evening.

On Saturday we were up and out early as we were going to the 7^th Mesothelioma Patient & Carer Conference at the Pullman Hotel St Pancras. The day was well organised and the venue excellent. There was a great deal of useful info about the disease itself and current trends in treatment – it would seem that the surgical option is regaining some popularity. Basically we are still looking for that magical cure and different research teams working on both sides of the Atlantic are doing their bit but from my perspective we don’t seem to progressing very much. We live in hope.

The afternoon session was more focussed on the wider aspects of asbestos misuse and legal issues.

The 3 speakers that stood out for me were:

Jan Egerton – a patient’s story – love you Jan you are a real inspiration to use all;

Christine Winter from Independent Asbestos Training Providers (IATP) who focussed her talk on asbestos in the home and schools;

Laurie Kazan-Allen, International Ban Asbestos Secretariat (IBAS) – described so much going on globally to ban this killer substance.

Perhaps most importantly it was a day to meet new and old friends who are travelling the same difficult journey as me – Jan, Debbie, Mavis, Denise – you are all an inspiration and most of all give HOPE. It was great to see Rose again too - remembering your beloved Norman - keep strong x. Also not forgetting Ray who somehow managed to morph into Prince Harry by the end of the day.

Mavis, Jan, Debbie and me

So into another week. I have my flu jab to look forward to and a visit to my oncologist at Canterbury. Hopefully a couple of days out too. Need to plan a few holidays for me and my carer!

Tess x

Flu jab and keeping calm

This week I had an appt with my thoracic surgeon to check on the drain.  The x-ray was good – no change in the last 6 weeks. To my surprise my weight was exactly the same as 6 weeks ago – I thought I had lost weight again but clearly Alan’s cooking and extra calories from chocolate and jelly babies are doing the job. 

This consultant really knows her stuff but she has a very forthright manner and does not mince her words – she said 'I recommend you have a flu jab because if you got flu it would most likely kill you'.  Needless to say my flu jab appointment has been booked! She does not want to see me again for 3 months (Jan 2013) !! 

While we were in Canterbury we had lunch in The Olive Grove where Alan and I shared a Mezze. I then did some shopping – glad I am getting back into that now.

I had a reflexology session mid-week – need to keep calm if I am to carry on!

Friday was a quiet day so we went to lunch at the Ambrette. Always good and a lovely way to spend a couple of hours.

Congratulations to our friends  Jacky and Bernard on the arrival of their second granddaughter this week. Great news. Welcome to baby Honor Janine.

Congratulations to Danielle and Brandon on their wedding yesterday in Toronto. Danielle is our daughter-in-law's sister. Our granddaughter is too little at 14 months to be a bridesmaid but oh my did she look cute!

So into another week and a few more hospital appts. Tess x