My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
Diane lovely to hear from you and thank you for letting us know how the day went.
Becca thinking of you today and sending you strength xxx
Joan I hope the results are good. Thinking of you both.
Christie I think you're amazing as always. How are you feeling. Are the headaches feeling better?
Wow for the crawling babies : )
Laura how long did it take you to organise your wedding? We're thinking about trying to do it a bit last minute & fast at some stage.....
Gayle have a lovely weekend at the caravan. Great to have an escape like that so that you can all get away together. Thank you for your reply about Martin's tiredness during treatment. It has helped my brother & I to know that and given us hope that Dad won't always be like this. Thank you.
Emma & Carrie thinking about you wonderful women too xx
My Dad is now on the 2nd round of temodal. He is so confused over the day/time that it has been very hard for him to figure out what to take when. I am phoning him each morning and making him get up to take the pills and my brother has made a chart for each day which he ticks off so he knows he's taken them. It's very hard him being alone and now getting more confused about little things. I did a food shop for him online today. Funny thought to be buying food from asda all the way in New Zealand!!
Hello everyone thank you :) unfortunatally my temp went a bit crazy on wednesday and they told me to come in to hospital, still here now but he said i should be going home today, i have a urine infection and i caught another infection which was making my temp funny but its stayed normal the last couple of days also good news from the scan, the bit they wanted to keep eyes on in the very center on top has shrunk since the last scan on the 29th april, so in only 21 days it got smaller :-D thats put my mind at rest as i thought that it had grown and thats what was giving me headaches, they think it may have been due too dropping the steroids to .5 a day so on wednesday they put them up to 8! But yesterday after the scan its back down to 4 which is nicer.
Great news Christie good that tumour has shrunk- but sorry you had to go into hospital hopefully home soon- H is a little better today and no more 'episodes' Take care all Love Dianne J
Well yesterday turned out to be a nice day (?) it did have a few hiccups...the minister decided to suffer from stage fright and messed up a few times, the organist played the wrong tune to our chosen hymn and dad couldn't be carried in as the church was to narrow and the aisles too small (good luck anyone who decides to get married there!) But dad came in and played in the background was Jim Reeves 'welcome to my world' (dads fav song) and he left the church to John Denvers 'my friends'. I took the first cord at the cemetary..i overheard in the background "thats wan o wullies lassies...wits she dain wi a cord - to translate why did i have a cord as im a girl. Shortly after dad was laid to rest my dads brother who suffers from low blood pressure...fainted, thankfully on hand were 150 of the NHS finest who administered oxygen and took him to hospital to be checked over. We had tea at the local social club where we have spent so many wonderful nights as a family, then people came back to ours and filled the garden and the downstairs of our house...eventually leaving at 1am. I had no appetitie and a bottle of wine and a few beers went down to easily...but was remarkably ok today and enjoyed a trip to the beach with the attention deprived seamus.
So we gave him the best send off we could, the sun shone there were quite a few tears and hundreds came to pay their last respects.
I'll leave you with the Eulogy written by us but given by Fraser who's delivery was absolutley beautiful. I have never been more proud of my little brother as what i was yesterday.
Night folks xxx
18 months ago my Dad stood on front of a room of people at my 21st Birthday party and spoke very kindly of me and my limited achievements in 21 years. I had looked forward to returning the favour for my Dad’s 60th this year, but as things have transpired, it is today that I get to express how proud I was to be Willie Boyce’s Son.
As many of you know, I am not a man of few words, unlike my Dad, and therefore my words may never carry the weight nor the sincerity that they did when my dad delivered them with apparent ease. I struggle today to find any words true enough to describe a man who spent his entire life putting the interests of others above his own.
It is clear today, if it were ever in any doubt, as I look at how many people have turned up to pay respects to my Dad, as it has been all week when apparent strangers stop me in the street and tell me how wonderful a man my Dad was, that the world is a poorer place without him.
I was planning to give an example of exactly why this is the case, but anyone here today will have a story of their own, and for a life lived so true, filled with so many acts of random kindness and sustained by a relentless desire to care for other people, no one example seems appropriate.
The disease which eventually took Willie from us did not do it at once. Gradually, it stole many of things which made my Dad the capable man he was, but even this most complex of diseases with the most hopeless prognosis was powerless to change the essence of the man nor the qualities that truly defined him, right to the end my dad was the caring gentle giant he had always been, not an unkind word left his mouth.
For my family, the only comfort I can offer is that the suffering and the grief we feel today is ours; it is not Dad’s, for he is at peace. And the enormity of the void that my Dad leaves behind merely represents the great pride that must be yours Mum, for a man so complete, loved you so completely. And the immense privilege, Rebecca and Rachael that is surely ours, for a man whom it was an honour enough to have known, was a man, who above all else, was proud that we were his own.
Oh Becca that is beautiful. It made me cry. Sounds like you gave your dad a great send off. What a wonderful family he has and he will obviously leave a huge gap for you all. Huge hugs xx
Christie I hope you get home soon. Sorry to hear you're in hospital but great news about the scan.
Joan I hope you are both ok after your scan results??
I am doing a 10km run next month so if anyone would like to sponsor me here is the page: www.justgiving.com/ronadoff I'm raising money for dorothy house hospice. Thank you.
My Dad is in such a muddle with day/time and struggling to take his temodal correctly. I'm having to phone and prompt all his med taking. Not sure how long this can go on. Thank goodness it's only 5 days at a time. I am worried that things are deteriorating though and will be so glad to be there in just over 2 weeks now.
Your brother's words were immensely moving and gave a wonderful tribute to a man who was loved and respected by so many. I hope you can find comfort in the days ahead.
to Becca - that was lovely!!! sorry about th little hiccups but it sounds like a beautiful send of for your dear Father. xxxxxxxxxxxxxxxxxx
diane J - glad H is a bit better :) She might get the type of 'seizurs' i get because i dont really class them as seizures either, more a 'funny turn' have you managed tohave any luck with the night club ? xxxxxxxxxxxxxxxxx take care everyone xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
We got a very good tablet dispenser which I think was from "superdrug".
It has Grids of Monday to Sun ie. 7 days and each day has 4 time slots for the tablets .
It is called 'PillMate' and it works very well for taking multiple tablets.
Currently Becky is taking 15 tablets daily directly related to her GBM. She and I are only 48 and we still sometimes lose track. Even on her very best days, her medication is one of the most difficult reminders of her illness. She is really keen to get the steroids back down.
We got a very good tablet dispenser which I think was from "superdrug".
It has Grids of Monday to Sun ie. 7 days and each day has 4 time slots for the tablets .
It is called 'PillMate' and it works very well for taking multiple tablets.
Currently Becky is taking 15 tablets daily directly related to her GBM. She and I are only 48 and we still sometimes lose track. Even on her very best days, her medication is one of the most difficult reminders of her illness. She is really keen to get the steroids back down.
