Sarcoma UK and Trust.

Well the East Midlands Sarcoma Support Group had there charity Curry night on Monday 17th May. After lots of preparation (and thankfully some help this year!), we managed to raise just over £2200 for The Sarcoma Trust. The event was attended by 76 people and the auction alone raised over £1400 - I feel so honored to be part of such a lovely bunch of people that attend the support meetings in Leicester. Importantly we do not feel alone in fighting this cancer "Sarcoma knows no boundaries", and although we are all unique in our diagnosis / sites of tumours etc we continue to support and raise awareness of Sarcoma. At present we have over 26 members of the group in Leicester / Nottingham and that does not include young people / or children that have Sarcoma's in the county. Young children and adults are often having to go through very major surgery / chemo to try and fight this (some with debilitating surgery); we do have one lady who attends the group who lost her son at the age of just 18yrs.
So yes we will continue to try and support the research / drugs trials into treatments for Sarcoma - as at the moment there is not specific chemo treatment with more than a 20 - 40% chance of working (and this is only on certain Sarcoma's - mine is not one of these).

I am still joint list mamager for the Sarcom UK email site, but am struggling with this at them moment. Supporting those that are also in a difficult place is difficult, and I too never know whether I am using /saying the right words. Also emotionally not sure if I am strong enough to carry on this work at the moment. But will take my time in making the deciosn as to whether to simply just carry on as a member - they have certainly offered me lots of friendly help / advice and support since 2006. Especially good advice given when having the thorocotomies - exercise to get those lungs working!!!

Going to be now, night , night and love to all. XXX

Sun and Indian food!!

Well the sun has been out today (hip,hip, hurray!!). David was home early from college, so took time out to spend some time with him. Went to Wistow garden centre for coffee, cake, oh and a walk. We talked and laughed and I am so proud of him as he is such a nice caring lad...cares about his friends, family and sister, bless!!!

Later Andrew came home from a London meeting and we all took time out to not cook (not even David or Harriet!!!), and went to the local Indian to eat. Harriet looked so beautiful in her dress - smiling and laughing. David enjoyed a pint of larger and Andrew a hot curry (brave man!).

By the way - Harriet made a great toad in the hole last night, thanks bean XXXX

Having a positive day today and enjoying the sun, but honestly, thoughts about this damn cancer never go away. The breathlessness is worrying me as if it does not get better over the next two weeks; the oncologist said, then it will remain as it is (and also, as I am aware get worse at some point). I have not seen friends from the North since I had my radiotherapy and it is difficult to explain how the wheeze and breathless has affected me - not quite like ashma (can never spell that word), as inhalers give very little relief. Anyway had to cancel my trip to the North (oh I still love Yorkshire), and am hoping to go next week.

Little things that can make you smile!

Well I have had my down day, so now its on the up (back to the mad me!!). Spending time with friends and family can sure make me smile. On Saturday the sun was shining and David wanted to spend some `family`time together (I am so please that he still wants to do this at the tender age of 18yrs!). So Andrew, David, Harriet and I all put on our sunglasses and popped to the park area at the college and spent time throwing the Frisbee (well I was not so successful as I am on the WII), and kicking a football. It was great seeing the lads having a kick about and laughing together, especially during the stress time of exams for David. Harriet was happy sat in the shade watching, at times joining in and talking to an insect(well if that makes her happy!!!). Anyway it was great to spend this simple time together away from the house and the call of housework or studying, TV's and computers and we all come home SMILING - joy!

Going for check up with oncologist today - so crossing everything XXX

I do not want to upset anyone!!!

I may have my down days,but believe me I do not want to upset anyone. I can not predict my illness - however I know that my breathlessness is not good and am trying to face the possibibility that this will not get any better - but what do I say to people??? They always want the good news !!

Down time : (

Well I am human after all and therefore have down times. Made the mistake of reading the `Death notices`today, (not sure why I do this at times), to see if anyone was younger than me and see what they say about that person. Found one that was aged 47yrs and seemed very close to home - could that be me? Or will I be younger?

Made myself very sad now and do not want to leave my family, Harriet, David and Andrew behind. Would love to meet grandchildren and to spoil them (well that's what Grandma's and Grandad's are allowed to do!), oh and before that see the kids wed (or whatever they intend to do). But I suppose the BIGGER picture is that I am hear NOW to love them and spend time with them and my friends.

Will friends still want to see me when I'm not well? Or when I am finding it difficult to cope? This will probable be the time when I `hide away!`.

Not sure if I will be able to sleep tonight; probable getting stressed as I have my checkup this coming Monday to see whether the radiotherapy treatment has been affective.

Family and remaining happy.

Well we did have a great time in London together. Harriet and I managed some shopping (well she spent my money!), and the boys did electrical/computer shopping. Then in the evening we went to see Billy Elliott - the kids dancing was absolutely amazing!!! Afterwards Andrew, David and I went for a curry at 11pm at night, (it can only be done in London, Harriet retired to her room, bless!).
Saturday - went to the tower of London (the sun was shining, wow!), it was an amazing place and we all enjoyed the experience. Amazing history.

This is all about trying to make happy memories - moving away from the illness and cancer for a day or two can lift the spirit. We are great together and have lots of fun and laughs and it is important to have time together to do this and get away from exams, work and cleaning and washing of the house. The illness will never go away but I can still laugh, be mad (nothing new there!!), and enjoy time with family and friends.

Harriet and David make me laugh, and equally when they spend time together like this there relationship is stronger. OK they can gang up on Mum and Dad - but hey whats wrong with that in a fun way.

love you lots Andrew, David and Harriet - life is great with you around. XXXX