Valentines and Pancakes

Well I am pleased to say that things have moved on since my last blog entry. I am having yet more blood tests, an injection and a pre-chemo chat this afternoon and if all is well chemo is scheduled to start next Thursday 21^st. They are using a different combination of drugs this time which should be gentler on my body. This treatment is just palliative and not curative but if it works and gives me a few more months of good quality living then I will grab it. I am not looking forward to it and to be honest am rather scared but needs must. My treatment will be done in my local hospital so at least travelling won’t be an issue. I will try and keep the blog updated.

Well Masterchef Alan excelled himself once more with the cooking of pancakes. I had to reject the first one he offered me as it wasn’t cooked enough for my liking but he is a quick learner and the rest were superb. His maple syrup and banana ones deserve a special mention.

We had another good lunch out this week. This time with cousins Paul & Jean. Always good to see them and catch up with their news and that of their wonderful family. We went to Bartellas in Meopham – a lovely venue. Thank you guys.

I have received some lovely gifts – beautiful flowers from fellow mesowarriors – what a caring, sharing bunch of friends they are. 

Also a gorgeous mat / wall hanging which my son bought for me on his recent trip to Japan. He knows I love anything a bit arty farty!

So that’s it for this week apart from wishing our son Jon a very happy 38^th!!!!! Birthday today – have a good one honey!

Onwards and upwards!

Tess

Waiting Game

Still playing the waiting game. Why are you told one thing by the oncologist and it doesn’t happen. Why tell me chemo will start in 2 weeks when clearly it will be at least 5! There was no mention of the special kidney function test which took 10 days to get the appointment and then another 10 days to get results before anything will happen. Why do they do this? – you get yourself psyched up to start treatment and you are made to wait. Why not be honest and say 5/6 weeks at the start instead of messing with your mind like this? Right hand not knowing what left hand is doing once again. Can you tell the anxiety is getting to me?

We had a good weekend meeting up with Bernie, Norma, Louisa, Jon, Gaby, my darling Ethan complete in Ninja outfit. We went for lunch at the Rendezvous in Westerham – awfully slow service but good food. Later Bernie & Big Al shared a bottle of 1950 port which needed to be drunk! We popped in to see Chris & Mick before returning home on Sunday.

The weather is bright but still soooo cold and the winds have been vicious. But the bulbs are doing well and hellebores in full bloom so there are signs of spring.     

Beautiful hellebores

 

We have had mixed news amongst us mesowarriors this week. Jan had a very positive result at her last scan so I am delighted for her and Gary – they can now get on with enjoying life. Sadly Debbie received not so good results yesterday and will be starting chemotherapy again next week – we will support each other and walk this chemo route together. How I hate this awful disease.

And while I am at it I think Michael Gove is a twat!

Tess x

Statistics and a Snowman

Things have moved on a bit here and Mr Nasty is progressing once more. Both my oncologist and the 'big man' at Barts think the time is right to give it another zap. So I am starting a 3rd regime of chemo a.s.a.p. I have already started on the premeds and once the blood tests have been done I will get a starting date. There is a chance the chemo will slow down the cancer growth for another short while so I have to take that chance – the alternative doesn’t really appeal! 

The real problem is that statistically I am on the ‘tail’ end of the survival graph and there is no set treatment/procedure for us peeps that survive longer than most. I am grateful to Linda for reminding me of the essay ‘The Median isn’t the Message by Stephen Jay Gould. I have read this before but it helped me to read it again. Just hoping this tail is very, very l  o  n  g.

Meanwhile like most if the country we have been  contending with weather. I love the snow but not the cold penetrating winds that have accompanied it. Always looking for photo opportunities Alan ventured out into the garden:

I also want to show the ‘Tunbridge Wells Snowman'. I think maybe Ethan had a bit of help with this!

Ethan's snowman in his garden

 Tess x

Life, the Universe and Everything

Yes I have been thinking again – always dangerous!

Both Alan & I have been hit with some sort of bug this week, abdominal cramps and overwhelming tiredness – perhaps it was sleeping sickness! No temperatures or sickness etc but it laid us low for a couple of days. During my enforced periods of rest I got to thinking:

I was told by my thoracic consultant that 1 CT scan was the equivalent of approx 300 X-rays in terms of radiation. Now during 2012 I had 6 CT scans – equivalent to 1800 X-rays – works out at approx 4.9 X-rays per day for a year! This is still well within the radiation safety limits and the very small induced cancer risk does not make any difference to me with my condition. These 6 CT scans were all with a contrast dye which must do something to the body even though the benefits far outweigh the risks. Makes you think though doesn’t it?

My next thought was regarding the storage and availability of my CT scans. The scan I had in October was compared to one I had last January (both done in the same hospital). I asked what had happened to 4 scans in between but these had been done in a different hospital in a different Health Authority for the purpose of the drug trial I was on and therefore do not appear on my computerised medical records or so it would seem as otherwise why else would the radiologist ignore them? Where are the paper notes? Questions will be asked next week.

Still on the topic of scans I also found out this week that if a scan is sent from my local hospital to another in a different health authority they are deleted if not uploaded within 14 days. Why? 

Why has my taste for certain food changed? I guess my body is telling me something. Until recently I really disliked Baclava and Pilchards ( not together) but now they are my favourites and now I really dislike crisps and not keen on bread. Hmmm no more thinking for now but the answer to all these questions must be 42! 

Both Alan & I are on the up again so I can ease up on the thinking for a while! Hoping the forecast snow and ice is not too bad as I do like my chef to be able to get out and buy fresh produce!

It is with great sadness that I offer my condolences and love to the family of fellow Mesowarrior Cher Bright who passed away on 5^th January – so young, so beautiful. RIP Cher.

Tess x

2013

Welcome to my first blog of 2013. I wish you all good health and happiness. 

We are just recovering from the Christmas festivities – phew! Having the 2 Grandies here was amazing. They had a great time together – lots of laughter. Tim, Anna and Lilah returned to Toronto on Thursday. I had very mixed emotions as we said our good-byes – each of us with our own thoughts. I have a few photos to share of the Gully family Christmas. A massive hug for Alan aka Gramps who made it all possible and the Christmas lunch was fabulous - cooking for 9 adults and 2 little'uns is no mean feat!

Ethan and Lilah waiting to be fed.

Lovely Lilah - looking so like her daddy.

Ethan would not go far without his Santa hat

My favourite people

Off to the park

Feeding time. Louisa took the photo. Where did all those bottles come from?

 The next round of medical appointments seems to arrived quickly. This week I have a CT scan and a check up with my thoracic surgeon. Waiting for scan results is perhaps the hardest part, your life is on hold until you know the outcome and hoping and praying to hear that word ‘stable’. We always fear the worse but hope for the best. Fellow mesowarriors know what I am talking about. Meanwhile we get on with life.

The holiday was also tinged with sadness as I received news of 2 fellow mesowarriors who passed away on New Years Eve – I send my love and condolences to Faye and Lisa and their families

Tess x