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.
Lorraine great too see you here xxx hope your mum is doing ok, good to hear you and Scotts love story, a scottish meet would be great eh!! Why did you have to wait so long for a scan thats a long time?? We go back on the 16th april for scan number 3 I am ill thinking about it already!! we will get a chat one of these days love to you all. xx
Becca, nice to hear from you too, hope your dad is well and you and the rest of the family, hope you are not celebrating too much over a dive that should never hve been a free that led to the 1st goal!! love to all of you. xx
Lesley, perfume is gorgeous it called flower bomb by Viktor & Rolf, although all I can smell now are the lillies from my flowers they are my favourites, hope you dad is well tonight and your mum and the rest of the family, love to you all.xx
Carrie, hope you are enjoying having B home with you. love too you both.xx
All my other lovely friends, sending you all my love, god didnt allow Rangers to win today, but more importantley maybe the cure is on the way.
love Gayle xxx
FormerMember
Hello everyone
Glad to hear you enjoyed your day Gayle. Try not to spill your wine tonight! And as CH said thank you from me too for all the effort and support you put in. It has made such a difference for me knowing that we are all here to help, listen etc. I don’t know what I would do without you all.
Diane – I hope things aren’t too trying for you at the moment. Physically it’s such hard work isn’t it? Along with my strapping 21 year old I had to try, using the hoist, to get B from his chair on to the commode as he decided he couldn’t wait for when the carers came in. We managed, sort of, but I was kna***red by the end of it. I don’t know how the carers do that all of the time, and with smiles on their faces too.
Emma – pleased to hear that Matthew is better than yesterday. It’s easy to sometimes forget that they got ill before this happened and that they may just be poorly and it’s nothing to do with the BT or the treatment. Fingers crossed for no more headaches. Hope you had a restful day without the girls, did you manage to do any gardening in the end?
Lorraine – thanks for your good wishes. I loved the story of how you and Scott got together, especially the part about having to sit separately in the cinema. Glad you managed to keep the sweets!
Rona – welcome back to England. Hope the journey wasn’t too tiring. It must be very hard dealing with the jet lag with a young baby. B’s friend from Wellington phoned this morning. A few days after I told him how poorly B was he emailed me to let me know that he will be flying over at the end of the month. I think it says something about B that a friend who lives over the other side of the world is prepared to fly to see him at such short notice. The last time we saw him was on our honeymoon (three and a half years ago) so it will be good to see him again soon. I bet your dad is so pleased to see you and his grandson. It is shocking to see how someone looks when they take steroids. B’s face is so puffy, but his hair hasn’t fallen out. It’s actually longer now than it would normally be as I haven’t had a chance to cut it with the clippers since he had his biopsy in November. Usually I cut it very short once a month. How long are you planning to stay over here?
Lesley – Barry Manilow, Copacabana, one of my favourites, gets me on the dance floor every time. We’ve had a good weekend. Some friends travelled from Kent to visit today. They’ve actually visited more that some of our local friends! But it’s always good to see them, and they just take us as they find us. I hated the weekends when B was in the hospice as nothing productive happens then. I’m longing for the time when I can enjoy the weekends again, I suspect it will be a long time away. I imagine that it’s quite alarming seeing all the bruising on your dad and I’m sorry to hear that you think he’s lost him optimism. He may just be really tired from being messed around so much and may pick up and get stronger over the next few days.
Jay – it was really lovely to get your email earlier. Thinking of you and hope you had as good a day as you could have. Have Jon’s relatives gone back to Canada yet?
Izzy – I’m thinking of you, Blair and the baby a lot. I guess that because you haven’t posted for a while that things aren’t going too well at the moment, but I’m always happy to be proven wrong on these occasions. Sending you all big hugs.
Karen – Thinking of you too. It’s the anniversary of my dad dying today (12 years ago) and my memories of the time are still very vivid. B always remembered the anniversary, this was the first year that he didn’t. I haven’t reminded him. Sending you a big hug too.
My youngest son’s best mate is a Celtic supporter!
Hi to everyone else and hope you all had enjoyable weekends.
Carrie x
FormerMember
Hi Gayle,
As its your birthday i shall not go any further with this banter or comment on the ooh 25% possession (if they were lucky) that the gers enjoyed. Love Viktor and Rolf, I have it too..its bloody pricey but im worth it lol also agent provocateur is my second fav and wear every day ( i need to reign in my spending) Had a wee look at your photos and your flowers are gorg!! We are no further forward with travel insurance and its now a case of should we take the risk and go without.what company did you go with? insure cancer and free spirit said no to us ...as well as 6 or 7 others. Me and my b/f took dad to the beach today, he quite enjoyed it i think, though he did spend the entire time shouting at the dog who had managed to find a stick or small tree trunk to play with. This thing was twice his size...did make us laugh.
Good night all
xx
FormerMember
Hello All,
Just a quick one before bed,
Will catch up properly tomorrow, very tired as a hard night last night and a catheter fitted today.
Carrie you doing great and it's been lovely to email you too
Gayle HAPPY BIRTHDAY sorry my wishes are so late in the day xx
Emma hope you have had a good day and that things are okay with you
To all you other lovely ladies Lesley Di, Karen, Rona, Lorraine, a big hug before i log out.. more tomorrow promise xx
Jay
FormerMember
Hello everyone
just back and haven't caught up on all the thread yet but wanted to say hello and that I really missed you all - Had a wonderful time at Park Attwood clinic - what a retreat from worry, anxiety and feeling that you are responsible for every decision 24 hours a day - David had mistletoe infusions and injections, massage and yarrow and ginger poultices (!) and a lot of 'nursey' attention so he really enjoyed it - Bit of a "Carry On Matron" thing for him going on there I believe.....! it's quite hard to leave a place like that - we both got so looked after, something thats very important I now realise for those of us who are doing the caring -'nuff said
HAPPY BIRTHDAY GAYLE!!!! Hope you've had a lovely memorable day with your two sweethearts x
All you ladies, thinking of you and yours - Lesley, hope Dad improves and feels better in himself tomorrow x Emma -sorry to read of Matthew's 'blip' - glad he's better and hope you're ok x Carrie - love to you and B- glad he's home -wishing you both a special closeness at this time x Izzy - hope all is well - much love x Jay - thinking of you and Jon and sending love and hope that you carry on as warm and loving as can be x - Diane - hope that you're feeling as strong and reconciled to the latest news as is possible- wishing you some love and some peace of mind x Debbie - hope your Mum and Dad are having a wonderful time and that you're able to draw breath and rebuild your energies! much love x and love to you Greentree x Hello Karen - much love x CH Love to you and B x Becca love to you and your Dad and family x
Bit of a scrambled message as have to read posts tomorrow to really know what's been going on in this difficult, upside down world of us all - It was wonderful to go away for those few days but it's hard adjusting to all that real life stuff when you come home - Tomorrow - clinic urgh! and also a visit to the neuro-psychologist at Derriford - We pushed to get referred but don't quite know what he can do ??!!
Thinking of you all tonight - speak tomorrow
Much love, (((((((((((group hug))))))))))) Joanxxxxx
FormerMember
morning all,
Thanks for all your kind wishes, I had a fabulous birthday with my two darlings, it was lovely. Well today I am off for some hypnotherapy that should really chill me out, hopefully, weather is back to rain here again today after yesterdays lovely sun, my lovely neightbour took advantage and cut his grass and also ours to which I am grateful. xx
Joan, glad you and David had a great time, it sounds like David was really pampered, good for him!! xx
Becca, glad you had a nice day with your dad down the beach, I will email you the number of the insurane company that we finally got sorted with they were fantastic with us a company called MIA, will look for there number when I get home, you must have been watching a different game of football to me the one I saw had a 62% rangers 48% celtic possesion!! xx
Emma, hope Mathew is ok today did you call the hospital?? Hope Sasha was ok last night and you managed to get a sleep, Martin and I were up until after 2 listening to the love collection on the radio, with Martin still talking away lol, very tired today. xx
Lesley, your poor dad, it never rains but it pours, sending you all love, hoping your dad gets better soon. xx
Carrie, hope you are enjoying having your husband home, no wine was spilled yesterday lol xx
Jay hope that Jon is good today. xx
Izzy, hope that you are ok??? xx
Lorraine, love to you Scott, mum and dad. xxx
Diane, CH, Karen, greentreen and everyone else hope you are all well, must dash now as my appt is in half an hour.
love Gayle xxxx
FormerMember
Hi Gayle,
If you could pass on those details that would be terrific!!! Shall say no more on the game ;o)
xx
FormerMember
Hello All.
Been having a few bad days, yesterday being particularly disheartening. My dad cried all day, first time he has really done that, and he seemed a whole lot more lucid. Maybe that is why he cried so much. Adavan seemed to help with that.
Still can't get him to eat or drink much..is always a battle. We noticed his urine is turning a brown color also. Mom is calling the doctor this morning about that, I wonder if this is due to him not drinking much, or if that is a sign of a different kind.
He told me he loved me last night when we put him to bed. I think it is the first time he has said that to me since around Christmas time. I will cherish that.
Praying...for everyone afflicted with this horrible disease, and for all of the families suffering too.
Lisa....far away in Illinois
FormerMember
Carrie, that is great that your friend is coming over from Wellington to see B. It is amazing what friends will do and things like this do make you realise who your true frinds are at times. Wellington is where I live.
Gayle glad you had a nice birthday. It is my 30th in a couple of weeks!!
Joan glad you had a good time too.
Lisa sorry to hear about your Dad. It sounds so hard. It is great to treasure moments like him telling you he loves you. That's very special. Thinking of you.
Becca hope you manage to take your Dad on holiday. It will be a great thing to do.
I'm having a lovely time with my Dad and so glad to be here. It will be hard to leave. He has 3 days left of radiotherapy which is pretty amazing. Does anyone know if they usually try to get people off the steroids after the RT or is it different in every case? He hasn't really heard anything but before the treatment started someone mentioned trying to get them off. Dad's having his usual afternoon nap right now so I'm off to have a play with my little boy.
Take care everyone and enjoy the sun xx
FormerMember
Evening all
Carrie, great news your friend is coming over to see you and B, hope you and B are enjoying each other again.
Lisa, sorry to hear that you are going through such a rough time at the moment, but hearing those three words will mean the world to you, I know it does too me.
Greentree, so glad you are having a good time with your dad, bet he is really enjoying spending time with your son!! Are you still going to be over here to celebrate your birthday with your dad? After the RT finishes they will start to reduce the steroids, with the aim of completley stopping them altogether, some people get off them altogether, some stay on a low dose and some on a high every one is different.
