Sunday, 7 October 2012

Conference Update

Having had a suspected severe angina attack on Tuesday that started around 7.30 and didn't ease off till 3am Wednesday morning, then still feeling ill till Thursday it was debatable whether we would make Saturday, but I just keep pushing myself that extra mile and besides I hate letting anyone down as I had to make a speech and leaving it so late would have caused Liz another headache.    So the four of us arrived in London around 1.30 and headed to the hotel, thankfully we made a fast train and the journey passed so quickly, much faster than flying and probably the same price.

Liz had promised to go and vote for a friend's picture in the ICA, so we headed to the Mall in search of the gallery and popped in, I must say I am pleased it was free as looking at some of the art work it beggars belief that some work is called art, and some of prices they expect is unbelievable! 

Honest I was shocked, I forgot to take a photo of the one we voted for but all I can say is it was to a higher standard than these, but then who am I to judge.  There were some strange things on show too, the best thing in the room was a statue made from bandages and plaster of paris, soldiers coming back wounded in the first world war.  Now to me that was art.
Hence we didn't spend long in the gallery and made our way to Trafalgar square.  Had something to eat and a walk around Convent Gardens.  We listened to an Opera Singer, who was really good, then made our way back to the hotel.  By then my kidney was aching badly and my heart quite a weight in my little chest.  The one good thing I do know is that my heart is strong so I truly believe the pain in their is the meso getting up to its old tricks.  But how long can your heart sustain such pain?
Getting back to hotel I just wanted to step into a red hot bath, oh no it was a walk in shower, so I climbed under the duvet and went to sleep for a couple of hours.  I had a terrible attack of the sweats and I must admit the bed was soaking, we had to leave the sheet back so it would dry for the night.  Feeling somewhat alive, barely, we went down to eat, it started to rain as we decided to have a walk along to St Pancreas and look at the new shopping arcade inside.  Then back to the hotel.  A quick drink (£30.00) for a round of drinks for 4, if hotels dropped their prices maybe more people would fill the place!  I disagree with the built in service charge, tips should be on service no expected.
Just as we were coming back inside the hotel, waiting to greet me was Debbie, she had spied us walking out from where they were hidden in the corner.  It was wonderful to see her, its been quite a few years.  Mind I honestly think she didn't do herself any favours making the way to the conference, she looked tired and you could tell she wasn't well.  I had emailed Mavis on the Thursday saying I wasn't sure about going and her reply was we are all ill who go, which is correct, but Debbie has really pushed herself to get there.  It is good but at the same time I do worry about her, if her health fails then there isn't another one to replace her fighting spirit in her area.
Considering the cost of the room, the bedrooms were nice and spacious, the beds soft and comfortable, the pillows rock hard.  Neither Gary or I slept very much, we couldn't get our heads comfortable, both had stiff necks the next morning and I had bad sweats again.  As we only had one bath towel each I couldn't dry myself off so I pushed him to near out of bed and we both slept on his side, me trying to find a dry spot.
Standing outside the next morning we didn't see many people enter and thought oh no not many have turned up, we didn't realise you could access the conference area via the main lobby!  It was lovely to meet up with people I knew via the Internet but to see Heather again made my day. 
Chris and Ann were there from MKMRF and it is great that Chris has got the Tissue bank up and running, lets hope that the Doctors around the UK will send tissue for the scientists and researchers to be able to get to finding a cure for this miserable cancer.  The tissue bank is something that should have been set up years ago, had it not been for Chris it still would not be so.  Hopefully too, her stand made much needed money to go to her charity which funds so many things for mesothelioma.  The June Hannock Fund also had a stand and they too donate a lot to Meso UK, these two charities do wonderful work and long may they continue.
Dr J Steele chaired the conference and told us of a two new trials, one surgery vs chemo and a new chemo mix of Pemetrexed and Cisplatin together with an agent Gantespib.  No one can pronounce it!  John Edwards was unable to attend so Liz stood in and talked about surgery and which hospitals carry it out.  Then a lovely Surgeon talked about surgery for Peritoneal Mesothelioma, only around 250 cases a year, a small figure in comparison with Pleura.  The only hospital to carry out surgery for this type is in Basingstoke.  They do a wash with chemo when the debulking has been carried out, apparently this can't be done in the chest because it can cause all types of problems.  Speaking to Graham who had surgery in 2002, he believes he had a chemo wash, maybe that is why he is still doing so well.
I met a young man and his wife, he is 44 and just diagnosed, his battle is now starting and is going for the surgery option.  It has come a long way and I hope he has better success than I.  Although I did warn him the first few moments of realising the pain and what you have put your body through is terrible.  Strange to meet someone at the same age I was just starting out on this terrible journey, it brought back sad memories.  I am sure I was the only one there that has had so many treatments, 2 cycles of Chemo, 3 surgeries, 3 rounds of radiation and 3 cryo procedures, most at the most have had 1 of each.
I took the stand and did my talk, reading my words I could feel myself getting breathless, Liz, bless, offered me some water, I told her I would just cough then lost my place.  I ended up looking to the back of the room and free speaking, I understand from those who listened that it went down well, I must admit I have never heard a room so quiet.  The words just flowed, but then I would be passionate about this cancer and what should be out there, I live and breath it everyday of my life.
The adrenalin had kept me going, as my wonderful hubby predicted it would, we left just as lunch started, I am starting to consider his feelings and instead of me pushing my boat as far as I can I am towing myself in so he doesn't have to pick up all the pieces from my body breakdown.  Hence, why I am worried about Debbie, their isn't a Mr B to pull her back in when she is wearing herself out.  I must admit though I really did want to stay till the end but that would have meant us coming home around 9pm.  I also had a phone call from home, Bear wasn't eating and his hips are now and truly doing the Elvis, Lexi is worn out from him constantly standing over her and Chris needed to run errands but didn't dare leave them alone.  So arriving home at 5 instead of 9 was the right thing to do.
I met Denise and her partner Sid too, what a lovely couple, again a tragic story, her chemo didn't work and is waiting to see what treatment she can try to curtail the growth of her mesothelioma.  I hate this cancer with a passion.
Needless to say I slept well last night, although Gary had to wake me up several times as I was having bad nightmares and the sweats.  When we got up I noticed the house was cold, guess what the heating has broken down again!  This new boiler seems to breakdown all the time, our old one hardly every stopped working, I wonder why did I have to change the house and put a new boiler in!  It is so maddening as it is cold.  Outside warmer than inside I went with him and the dogs over the field, it was lovely we sat under the oak tree for ten minutes but sadly we talked about meso and what the hell am I going to do.  Once I see the heart man and ensure it isn't my heart then instead of the trial I think I will need to go straight on chemo, my prayers hopefully will be answered and it will do what it says on the label, otherwise I am up s*** creek without a paddle.
I also asked J Steele why can't someone from abroad use a hospital and could Dr Abtin use his?  He told me to enquire at the London Clinic so on Monday that is a job I am entrusting to Gary.  If I could get somewhere for Dr Abtin to do his cryo-ablation then maybe he can treat a few of us at the same time.  I will let you know if I will be allowed to do this and if I can I will post a notice to see if anyone would be interested in using his services.  I am sure it won't be cheap but it can't be as expensive as travelling to the States.
The ironing board is calling, at least if I do it I will keep warm.  One last word, to Steve who starts Chemo again after 3 years of remission, I hope it goes well and he doesn't suffer to badly.  Just the thought of Chemo and my nerves start!
To my meso circle I wish you stable and remission, stay strong and hold you ground, we need to fight to get them to listen.  Also one other note, there are no written rules about oncologists treat us, only a few guidelines on what to do.  This may help you when your onco tells you it isn't allowed, ask by who?

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