Saturday, 14 December 2013

Christmas Wishes

Well the preparations are well underway in the Gully household for Christmas. Tim, Anna and Lilah arrive this weekend – can’t wait. The house is decorated, tree up and freezer fairly full. We are looking forward to catching up with family and friends over the next couple of weeks. I am so excited I am close to bouncing off the walls – something my oncologist would not approve of!  I am feeling fairly good right now if a little breathless on exertion and need to take a rest between tasks which I find very frustrating. My session with the counsellor was very positive and I will see her again in January. She has suggested hypnotherapy to help with the anxiety so I am considering this.

I have been keeping busy with a new craft project which you can read all about in my craft blog

I will not write another blog before Christmas – will be too busy playing! So I will wish you all a very Merry Christmas and a Happy Healthy New Year. I send special thoughts to those spending Christmas alone not by choice and those missing loved ones. To my mesowarrior friends I send love, positive thoughts and gentle hugs. God Bless you all.

Tess x

Monday, 2 December 2013

It's beginning to look a lot like Christmas.

Well the weather has been fairly dreich (a lovely Scottish saying which sums it up exactly). But we have been getting out and about and making the most of it although damp, cold wind is not good for me.

We have up to London to visit (not the Queen) but my consultant at Bart’s Hospital. He was very positive and was pleased with my last scan results although they were a few months ago now. We talked of the future and ‘what next’ in terms of treatment. He said there was a new trial starting at Barts in January for ‘people like myself’ but he was not at liberty to say much more at the mo as the trial was awaiting the final OK from ethical organisations. But ‘watch this space’ was the message. I did say after my last trial I would not do any more – it is a big leap of faith and in many ways I feel gives false hope but I have to keep an open mind until I know more. We talked about more chemo as and when and he didn’t think that would be a problem. Again I have said no more chemo. I have had 3 regimes now and my poor old body has taken a beating. My hearing is going, my teeth are going, my sight is deteriorating, my muscles are wasting and that is from what I can see. I do wonder sometimes if 5 months of hell to maybe get 6 good months is a good enough trade off. But when I am told this disease is ‘life limiting’ – (we don’t say ‘terminal’ any more) and when I see my beautiful family I know I will grasp at whatever is on offer.

Following Alan’s quizzing of our GP with regard to the Gold Standard Framework we were referred to our local hospice who deal with palliative care. I have no concerns or anxieties about visiting them and have been to several of their sessions already – breathlessness management, reflexology, relaxation etc. We had a long discussion with the consultant there who explained the Quality and outcomes Framework under which they and most GP surgeries in this area work to.  Quite an eye opener. As a result of this meeting I have been referred for counselling and have my first session this week. Sometimes having this dark shadow hanging over you really screws up your life!

On a more positive note we have just returned from a few days in Rye. Although the weather was miserable we did manage some shopping. We made visits to Biddenden and Chaple Down vineyards and a couple of very good restaurants. We can highly recommend the Landgate Bistro where I indulged in quails eggs, goose ham, mixed mushrooms, lemon sole fillets, chocolate brownie with cherries in kirsch and pistachio ice cream and Alan was tempted with quails eggs, goose ham, chilli fishcakes New Romney lamb and  British cheeses – yes I am trying to maintain my weight, not sure what is happening to Alan’s!!

Rye Lodge Hotel where we stayed

The Land Gate

view from hotel

We returned home via Tunbridge Wells for a quick visit to Ethan – my goodness he is growing up so quickly and his vocabulary is amazing, I have always thought he took after his paternal grandmother.

So we are into December and the countdown has started here. The Canadians arrive on Sunday 15th cannot tell you how excited we are getting. A year since we have seen our beautiful granddaughter and daughter-in-law. We saw Tim on his flying visit in September. Alan keeps on about putting the tree up but I am saying it’s too early. Perhaps next weekend. Looking forward to catching up with family and friends over the festive season.

We had another addition to the Robson family last week – so I now have another 1st cousin twice removed! Welcome to world little Isla Rose and congratulations to all.

Sad times continue in the Meso community.  Since my last blog John and Ron have both passed away. My sincere condolences to their families. RIP my warrior friends. 

Jan is still struggling with both the disease and side effects of chemo, Mavis is battling on and now awaiting scan results, Lou had positive news on her last scan, the chemo seems to be doing its stuff for her. Steve is doing well and still gadding about. Perhaps 2014 will be the year for a cure.

Tess x

Monday, 18 November 2013

Shopping, shopping and more shopping!

Not too much to report over the last couple of weeks – mainly shopping and eating!

We have been into Canterbury a couple of times and I have made a start on the Christmas pressies although much of this will be done on-line. We always need a coffee and /or lunch when we shop and no exceptions these last couple of times.

We visited the Thanet Farmers Market last weekend and again came away with a bag full of local produce including, cheeses, meat, veg and cider. This is a new venue and has the advantage of being indoors at the Marlowe Academy.

Last week we had a couple of days in France – more shopping! Purchased a few Christmas treats and Alan found some Biere de Noel so he was happy. 

This is such an easy journey for us on Eurotunnel – well under 2 hours from home to Calais even with the waiting about at the terminus. I was surprised (why?) by the lack of security at the terminus, no searches and not even a peep at our passports! We had two lovely meals while we were there.

We visited our favourite local restaurant The Ambrette. It has now been awarded ‘The Best in the  South East 2013’ by Pat Chapman.

So that’s about it for this week but we are starting to count down the days till we see Tim, Anna and lovely Lilah once more.

Congratulations to dear Ray on becoming a granddad! I do hope he will behave himself now as he has to be a role model for little Linden. On second thoughts he is fine as he is!

The meso community continues to bring happy and sad news. We lost Steve Cooke last week – what a character he was and full of fun and life till the end. RIP Steve and condolences to your family.
Lou and Jan are currently going through the trials of chemotherapy and hoping as we all are that they hear that magic word ‘shrinkage’ after their next scan. Mavis is recovering from a nasty fall and Steve continues to enjoy life getting out and about with his lovely wife Linda. John and Ernie are having a hard time right now. My love to you all.

Tess x

Saturday, 2 November 2013

York, London and Westgate-on-Sea

We spent a long weekend up in York. I cannot believe I have never been there before. I have passed through on the train to Durham many times in my childhood but never stayed there. It was my birthday while we were there and we met up with friends for a celebratory lunch. Coincidently Janice and I share the same birthday and are the same age and we met 52 years ago at secondary school! We did all the tourist bits in York and loved it. Our weekend was extended by a day as there were no trains from York to London on Monday due to the storm. A good place to be stranded. Here are a few photos to give you a taste of what we were up to.

Boat trip on the river

York Minster - it's enormous!

High ceiling in Minster
Tess & Janice at lunch in Hotel Du Vin

Castle Museum - I love doll's houses

Redundant Charge Nurse found guilty!

Steam Train Museum - this one for Mick!

Looks the same but is different!
Seen on the platform

 We also visited the Quilt museum but could not take photos. The Shambles was worth a look but too many tacky tourist shops for my liking.

We arrived home on Tuesday but had to return to London on Wednesday as I was going into hospital to have my chest drain removed. I had to have a general anaesthetic but all was well and I am now drain free after 16 months. It does feel strange without my fashion accessory and it did so much to improve the quality of my life. I am feeling fine and breathing well - long may it last. I experienced the NHS at its best and I am grateful to all the team up at Guys.  I am still having problems with my sore gums so will seek dental advice next week if it doesn't improve.

And so back to Westgate and thankfully no storm damage. We went for a walk along the prom this morning but it was not very pleasant as there were so many little flies in the seaweed that had been blown up onto the prom during the storm. So now I have to plan a few more trips before Christmas - an overnighter in France is definately on the cards.

Another week with sad news. A very good friend and ex-colleague died last weekend - RIP Chris.
Fellow mesowarrior Ian also passed away. My condolences to both families. Mavis, Jan and Lou are fighting their own personal battles at the moment and Steve is keeping busy and awaiting his next scan. I send my love to you all.
Tess x

Monday, 21 October 2013

Spiderman, Mickey Mouse and a dentist.

I had my review with my oncologist and she gave me those words I had hoped to hear so much ...STABLE disease -no new growth since my previous scan last June. This is the best news for me and so I have a 3 month window to get on with life before my next scan in January. Planning 3 months at a time is something all meso sufferers and their carers have to do. It is something you get used to and Oh boy do some warriors pack so much in to that time window.

 My visit to the dentist last week resulted in me coming home minus 3 teeth and plus 6 stitches. To be perfectly honest the actual extractions were not painful just a sensation of a lot of pushing and shoving and at one point I did wonder if my jaw would break! I am still taking painkillers to ease the soreness and jaw ache and I have moved on from a diet of jelly and ice cream to lasagne and tonight I will try Alan’s fruity chicken curry. So I am getting there and now able to speak, yawn and laugh at Ray’s daily offering of humour without pain.

We managed to get to our grandson’s 3rd birthday party on the 19th. I was so proud of him, having so much fun, so confident and so happy. He had his face painted as Spiderman. I will admit to shedding a tear or two when he blew out the candle on his Mickey Mouse cake. It was just over 3 years ago in Sept. 2010 that I was diagnosed with this terminal cancer. The prognosis was dire ... ‘weeks, months possibly a year’... I decided then to delay any treatment until after Ethan was born and I had met and held him. The love story has gone on since then and both he and my lovely granddaughter really have kept Alan & I going over the years – something positive to focus on when things get bad. Now I want to see them both start school – oooh that’s a big target but we’ll go for it!
Birthday Boy

Micky cake made by Emma

Mum and Dad - coping well!

Another positive outcome from the last lot of chemo is that the fluid in my chest has gone and my lung has re-expanded quite a bit. The reason for this is still unclear. I have an appointment with my chest consultant/surgeon this week to discuss my options with regard to removing the drain. As it has been fitted for over 15 months now it will not be a case of just gently pulling it out but will involve some surgical procedure – we will so find out exactly what this entails – ho hum!

Always thinking of fellow mesowarriors and their carers, those in difficulties right now, those on chemo, those awaiting to start chemo, those awaiting results to see if they too get to plan for another 3 months. My thoughts and prayers with you all.

Tess x

Wednesday, 9 October 2013

Time to set more targets

The weeks seem to fly by now. We have been getting out and about since my last posting.
My oldest friend Janice and husband Tony were down in London for a long weekend from their home in Yorkshire so they hopped on a train and met up with us in Canterbury. We had a good old chin wag over a drink in The Foundry and then a good lunch in The Olive Grove. I have known Janice since 1961 when we started secondary school together. I remember our teenage years clubbing in Klooks Kleek in Hampstead - now we are comparing photos of our grandchildren!

Another outing to Canterbury – this time to the Food and Drink Festival. It was so busy with lots of stalls selling their produce – most of it Kent produced or companies that have businesses in Kent. We came home loaded with cheeses, quince jelly, a variety of apple juices, meat puddings, pork pie, and pasties. It is great to be able to buy fresh produce. We had lunch in the newly opened Quex Barn restaurant which was lovely. We are very familiar with their other restaurant in Birchington so we were eager to try the new one.

Last weekend we were up in Leicester. The main reason for our visit was to attend the 8th Mesothelioma Patient and Carers conference. We arrived early Friday afternoon so were able to do a bit of sight-seeing. The clock tower and cathedral were worth a visit. I was impressed with the ‘flower’ arrangements in the cathedral – presumably done for a harvest service. 
I spy a cabbage

I don't think Alan's carrots would look quite so attractive!
We had a quick visit round the Richard III exhibition and found that very interesting. We were amused at some of the information displayed ‘Who was Richard III?’ ‘ he was called Richard III  because there were two previous Kings of England called Richard. Queen Elizabeth II is so called because there was a Queen Elizabeth before her! We have heard that they are dumbing down the history syllabus in schools but....!. Another fact which Alan took great delight in telling me was that after Richard was killed one of the ‘insult’ injuries he had given to him was a dagger up the anus! Ouch!
We walked round the famous market where it seemed everything was ‘4 for a pound’. A little known fact is that Gary Lineker used to work in this market on his father’s stall. Secretly I think Alan thought he might be doing a shift!
No visit to Leicester would be complete without a visit to a Curry house. We went to ‘Chutney Ivy’s' after a visit to a local hostelry which brewed its own Hoskins beer – Alan’s verdict was ‘delicious’!
The conference on the Saturday was a little disappointing with regard to speakers and information given. Sadly for ‘old timers’ like myself there does not seem to be any new trials or treatments on the horizon. So we just have to keep on keeping on. It was great to meet up with fellow warrior Steve and his lovely wife Linda. Steve is doing well at the moment and enjoying life which is great.
Steve and I sharing a joke

I want to share a couple of photos of the grandies. Thomas the tank engine paid a visit to Tunbridge Wells much to Ethan’s delight. Cannot believe my little man is 3 next week!
Gaby, Ethan & Thomas
Tim & Anna & Lilah went to Niagara-on-the-Lake for a weekend break. This picture is of Lilah looking out of the hotel window at ‘the big wah wah ‘ (translation – the big shower).
Room with a view

I have an appointment with my oncologist on Friday to discuss my recent scan. Next week I have my flu jab and 3 teeth extracted and hopefully some news on if/when my chest drain can be removed.

As always my thoughts and prayers are for my fellow mesowarriors. For Ernie and Ian who are suffering at the moment, for Beccy who has just lost her dad,  for Lou who is still going through chemo, Jan who is coming to terms with her cancer progressing and having to manage a stomach drain, Mavis who is anxiously awaiting scan results and Steve who should be packing for a trip to Budapest right now – enjoy! To you all and all others suffering I send you my love. Tess x