Buggar! Buggar! Buggar!

Buggar! Buggar! Buggar!

I think that just about sums up our feelings today.

I had an appointment with a consultant cardiothoracic surgeon at St Barts (top man apparently) to discuss possible future surgical treatment. When you have a terminal prognosis you need to find out what is available and try to keep ahead of the game. You read up on treatments and do the research and have lots of unanswered questions. This brings with it a whole load of stress and anxiety and pent up emotion. Well my appointment was for 4.15 pm. We took the high speed train up to London and arrived at the hospital about 3.45. After a short wait we were spoken to by the matron who informed us that the consultant had taken annual leave and ALL OF HIS CLINIC APPOINTMENTS HAD TO BE CANCELLED . Others in his department were apparently unaware that he was on leave!!! There was nobody else to take his clinic and nobody had thought to phone patients to cancel. This level of sheer incompetence just beggars belief! Unable to organise a proverbial whatsit in a brewery springs to mind.

Nothing we could do – getting mad with the matron wouldn’t change anything – wasn’t her fault after all but I really hope that someone gets a good reprimand. Surely the consultant has a PA/Secretary/Appointments clerk to sort out his diary!

To add insult to injury as I am currently on chemo  we decided not to try and travel up and down to London in one day as I am so exhausted so we booked an overnight hotel. The result of this is we are £200 lighter in our wallet, travelled 160 miles round trip, got so upset and uptight and all for nothing. I was MAD!

Alan just had a few words to add when we left – F**K, F**K, F**k. I think he is letting his emotions out at last!

Watch this space!

Tess x

St Barts, Sardo and Sales

Just home from a couple of days in London.

I had my 3 monthly review with Jeremy Steele (Consultant Medical Oncologist) at St Barts hospital on Friday. He still keeps an eye on what treatment I am having and suggests where we may go next. He is always positive and encouraging. He was pleased with my progress and was very interested in the drug trial I am on at Maidstone hospital. He has set up an appointment for me to see a consultant cardiothoracic surgeon for him to discuss with me a possible operation sometime in the future as they think I may be good candidate for this. I really don’t want to go down the surgical route but I will go the appointment armed with a list of questions and would really need some hard evidence from them that this would be a worthwhile treatment. For the time being it is just a fact finding exercise and of course nothing would go ahead while I am on the drug trial and keeping stable. I meet the cardiothoracic man on 16^th Jan and my next review with Jeremy Steele will be in April after I have finished my chemo and will know more about the effects of the trial. I like to keep ahead of the game.

We stayed overnight at the Edwardian Radisson Hotel in Tottenham Court Road – we got a good ‘seasonal’ deal. So we met up with my brother and partner on Friday evening and had a fabulous meal in a Sardinian restaurant ‘Sardo’ in Grafton way. Food was excellent as was the wine list. Would certainly recommend this one if you are in that part of town.

Felt fine on Saturday so we went to Regent Street and Oxford Street in search of sale bargains. I bought some shoes, a bag and a gorgeous cashmere jumper (cos I’m worth it), a couple of bits for the grandies and Alan bought some trousers and a trendy top. Then we went back to the hotel for a rather large and calorific ‘afternoon tea’ which was included in the ‘seasonal’ deal before heading back home on the train. So another good weekend. Sunday will be a day of rest.

Tess x

New Year, Good news and Targets

Well another year has arrived and it has started so well. My family were all here with me to see in the New Year – even little Lilah put it a guest appearance at midnight! Here are a couple of photos of the grandchildren taken on New Years Day.

More good news came yesterday  – my scan results show that I am ‘stable’ so the chemo and trial drug/placebo are holding the disease for the time being. So we now continue  today  with cycle 3 of the chemo and trial drug. I will be assessed again in 6 weeks. It may be that I am receiving the placebo and that the chemo is keeping things in check or I could be receiving the trial drug - I do wonder about this but will not know until the trial finishes in 2013!

So time to set a few more targets – all of last years being achieved bar one.

Target 1 – I want to go to Canada for Lilah’s first birthday in June. I believe I can do this even though it is a long time in the future.

Target 2 – A holiday somewhere warm for Alan & I to recharge the batteries when this chemo finishes. I am just starting cycle 3 and if all continues to go well there will be 6 cycles. So we are looking March/April.

Target 3 – to look after myself a bit more – I don’t like the wrinkles and dry skin that have appeared and the flaky nails. I know the medication has contributed to this but I can try and remedy things a bit – don’t like looking my age!

Target 4 – to up my treatments at the supportive therapies unit at Canterbury. I always feel so revitalised after massages, reflexology, Indian head massage. Will make some appointments a.s.a.p.

Target 5 – more weekends away in the UK. I love staying in hotels and being waited upon! Spending many good days with Alan. We will chose places we have not visited before.

Target 6 - to do my little garden area at the side of the house. It looks so bedragled and forlorn at the moment.

Target 7 - to continue to be creative and a bit more adventurous with papercrafting. I was given a fabulous book for Christmas from my daughter-in-law 'The Big Ass Book of Crafts'  which has some fabulous projects.

Sending positive thoughts to two lovely strong ladies who have been an inspiration to me. Mavis and Debbie who are both about to embark on more chemotherapy in their fight against this awful disease. Love you both.

So I hope 2012 is a good one for you. Thanks for your support. Tess x

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.

****

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