Well folks, i cant believe its a year since my diagnosis ! Such a lot has happened since then not least finding this forum without which i wouldnt have coped, i look in most days but dont post much unless its a topic i feel i can help with.
There has been a lot of sadness on the site just lately with people loosing loved ones and i would just like to give these people my sincere condolences on their loss.
I was diagnosed as incurable but treatable and it scared the hell out of me at the time, of course i know now that thanks to the advance in medicine and chemo treatments us patients can live a lot longer in some cases than we could have done in previous years.
I lost my Lovely Dad to this horrible disease 15 years ago and he didnt have a good death, i wish i had known about hospices and the work they do for end of life then.
I have had 4 cycles of Cis/Pem last year which worked for me and shrunk my main tumour by 75% and also cleared the lymph nodes of caner. I have been on Pem maintanance chemo since January and it seems to be doing its job allthough i havent had a ct scan for 3 months and am due one next Monday the 3rd August to see whats going on.
Hate waiting for scan results !!
My Oncologist is very upbeat and says even when the Pem stops working she has lots of options for me to try providing i am well enough and want to go ahead. I have been following the Docetaxel thread closely and have been put forward for the Matrix trial as well so we will see what happens.
Ive not suffered too badly from chemo side effects, well not anything too serious anyway and i count myself lucky as i know some treatments can make people very poorly with infections ect.
I have water retention and have gained a couple of stones since last year, i try to eat a healthy diet but cant allways stick to it as i find i have developed a very sweet tooth since starting chemo, something which i never had before. And in the last month or so i have developed a very dodgy tummy which has caused me a couple of emmbarasing moments though thankfully these have only happened at home. Daily i take a water tablet, a stomach tablet and my folic acid tablet so again i count myself as lucky.
I have developed a patch of odd skin on the lower left shin and the docs dont know what it is so refered me to a dermatologist and i have an appointment for September so will see what they say when i go.
I have had two wonderfull holidays in Scotland since last year and i am hoping to go again next spring to South Uist for a week or so with our friends.
I also get away in our caravan when i can and am hoping the weather improves next month as i am taking 4 of the grandchildren for a few days to the east coast.
Myself and my youngest Daughter have rekindled our rather rocky relationship and i am getting to know her children, my grandchildren after 6 years of not having any contact. Just wish my Son would stop playing silly beggars and come and see me too then my family would be complete again.
I am looking forward to the birth of my Daughters little boy in October, i have been invited to be one of her birthing partners and feel really honoured to have been asked, I cant wait to meet the little fella and i know they will be great parents.
I went to my local hospice on Tuesday for the first of six complimentary therapy sessions provided free of charge for patients. I had reflexology and can have the choice of this, hypnotherapy, Rieki and body massage. i really enjoyed it and nearly fell asleep on the bed lol.
If anyone has access to any of these treatments either at the local hospice or Mac centre i would highly reccomend it. I had not had anything like it before and i really enjoyed it.
The hospice are seeing if i might benefit from visits to the day hospice too just once a week to meet other patients and get me out of the house for a couple of hours.
My family are really good but they have there own lives and as i cant work anymore i am feeling extremly isolated at home.
My so called friends have seemingly dissapeared into the ether apart from one or two who are always at the end of a phone or up for a glass of wine and a natter for an hour or so.
I have met some nice people from the forum and we go out for some lunch and a natter every couple of months. Its nice to talk to people who really do understand what you are going through as they are going through or have gone through the same. Family do care but i think unless you have been through it you will never really understand.
Its easy between treatments and at times when i feel well to nearly believe im not ill but then something will be said about a wedding next year or an imprtant birthday in a couple of years and im back to earth with a bump and in tears wondering will i still be here to celebrate with whoever !!!
Im sure we all get these times of reflection and fear but i usually give myself a swift kick up the backside and tell myself if it wasnt fror the scientists, reasearchers doctors and our nhs i wouldnt be here to enjoy the things i do enjoy like my kids n grandkids, my garden and the lovely qiet times with my rock and my soulmate without whom i wouldnt be where i am today.
Well my blog update nearly turned into a book lol. Sorry to be so long winded but i felt it was important to get it all down paper.
Wishing you all as well as you can be. Lynn 2
