Tuesday, 22 January 2013

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

Sunday, 13 January 2013

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 5th January – so young, so beautiful. RIP Cher.

Tess x

Saturday, 5 January 2013

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



Thursday, 20 December 2012

Christmas thoughts



Well Christmas is almost upon us and another year looming. We have just been getting on with usual festive preparations. We have gone a bit OTT with decorations this year but what the heck! These are special times and the grandies will love it!.


I am not sure what the New Year holds for us – Mr Nasty is progressing this we know, so another regime of chemo is almost certain but I won’t think about that until it happens cos it scares the hell out of me. I have several hospital appointments and yet another scan in January – ho hum! So we live for today and give it everything we’ve got. I have a few targets to meet in 2013 – a wedding in April and a silver wedding party in June.

‘I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat.  I'm all ready you see.
Now my troubles are going to have troubles with me!’
~Dr. Seuss

 I wish you all a very happy Christmas and special wishes to those spending Christmas alone - not through choice - and thank you for following the blog. I hope you will continue with me on my journey in 2013.
Special thoughts to Mesowarriors and their families everywhere - maybe 2013 will bring news of a breakthough in treatment so we can move from 'palliative' to 'curative'. God bless you all 


Tess x

Thursday, 6 December 2012

Carrots, Canterbury and old Chums

The last few weeks seem to have flown by and we are into December already. It is very cold here in Kent as it is all over the UK. We seem to have our own little microclimate in Westgate and the weather forecasters so often get it wrong. Alan has been busy harvesting the last of the crops from the garden. This week's carrots came in various shapes and sizes - definately would not meet EU regulations. I will make no comment about the big boy in the front of the photo!

Posing carrots!



It seems that carrots are growing well in Toronto also

Lilah should be able to see in the dark!





Tess, Janice, Tony
We enjoyed a weekend with friends Janice & Tony who came down from Stokesley in N Yorkshire. We had a lot to catch up with as you can imagine much vino was consumed with good food. We had a very enjoyable day in Canterbury. We found a little cafe/bar that was getting in the Christmas spirit. The decorations were not finished yet but it was already so over-the-top and tacky that it looked really great! We then had a good meal in Deeson's which is one of our favourite restaurants. We took them on a whistlestop round the coast but in it wind and heavy rain we were not able to do much walking.







This week we have met up with Harry, Vicky & Gareth  which of course entailed another lunch out! Great to see all and thanks for the gorgeous plants and Ethan's Arsenal ball!

Healthwise things have been fairly quiet (this is good). Walking in the cold wind and damp is difficult but getting out each day is still a priority. Emotionally thing have been getting difficult but I am taking steps to remedy this. In my last blog (17 Nov) I mentioned Peter who had gone into a hospice - sadly he too passed away and his funeral was this week. Sending love to his wife Elaine and family. Other meso warriors Jan and Steve continue to do battle with chemo.

We are all watching this story as mesothelioma needs many more trials and innovative treatments if there is ever to be  a cure:

Lord Saatchi launches campaign to speed up cancer cures

By Marina Soteriou, 05 December 2012

Conservative peer Lord Saatchi has launched a campaign to speed up cancer cures by increasing freedom for doctors to stray away from standard medical procedures without fear of litigation.

Lord Saatchi: law restricts progress on curing cancer (photo: Marketing)
Lord Saatchi: law restricts progress on curing cancer (photo: Marketing)
Josephine HartLord Saatchi, whose wife Josephine Hart, pictured, died from peritoneal cancer last year, launched a private members' bill - the Medical Innovation Bill - at the House of Lords on Monday.
The law in its current form 'provides no inducement to progress' in curing cancer because it means that any deviation by a doctor from standard procedure leaves them open to claims of medical negligence, Lord Saatchi believes.
‘This is a deterrent to innovation in cancer treatment,’ he said.
‘Standard procedure is clearly defined in law as the practice which would be followed by a group of medical practitioners skilled in the particular area of medicine in question.’
Through the Medical Innovation Bill, Lord Saatchi said he wishes to encourage doctors to seek improvement on the standard procedure. One of the bill’s purposes is to ‘codify existing best practice as to decisions by doctors to innovate where evidence-based treatment or management is not optimal or appropriate, because the available evidence is insufficient or uncertain’.
Joined at the launch by fellow Conservative peer and chairman of the Institute of Cancer Research Lord Ryder and Oxford University’s ovarian cancer specialist Professor Ahmed, Lord Saatchi admitted that the Bill was unlikely to become law.
He said it was unlikely to be successful unless it was picked up and backed by the government.
He added: ‘It is more likely that the government is going to say "all is well, we are investing tremendous amounts in research, there’s great work going on. We in the government are fully aware of the problem and there is no government on Earth that could be doing more than we are doing therefore this bill is completely unnecessary".
‘That is what they are going to say unless we talk them out of that and we are all going to try very hard. Whether we succeed or not I don’t know.
‘Today is the beginning of a long journey.’

Article taken from GP magazine.

Tess x