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.
Hope today is a good day for you and your loved ones.
Sallye, your right, get your Mum to ask for her results, 4 weeks is a long time to wait. When Rob goes to the Western he gets his scan 1st then we go for lunch and by the time we get to his clinic appoitment the results are there, although they are not conclusive it gives us an overview and if anything bad shows up on closer inspection they would contact us (but so far this has not happened). Hope your Mum gets good news xx
Short one today folks, just had a call from our District Nurse, she has arranged for the Marie Curie Nurse to come sit with Rob on Thursday from 1 pm to 6pm so I am going to arrange a hair appointment and a manicure and can relax and enjoy without worrying??
Love to all you brave people, carers and loved ones.
Just thought I would drop in to say 'hello' as I have not posted for a while, my life is in a new direction now as my lovely Mum is not fighting this dreadful illness anymore, sometimes its so hard to believe its been 8 weeks today since I last seen her and hugged her, then other times it feels like 8 years since I last spoke to her as she was so very ill before she died, anyway this morning at 10.30 I will attend my first counselling session, this is something that I have chosen to do myself before I return to work so we will see how it goes.
The paperwork is horrendous that we are going thru the now and Dad has a bereavement meeting on Thursday at the bank to sort out more financial stuff, just something that needs to be done and before I return to work we are going to choose a headstone, it can't be put in the ground until 12 weeks after burial to let the ground settle but at least if its into fitting then I don't have the thought of having to do that when I am back at work, we have a good idea of what we would like, its the wording that I am struggling with the most as I just want the very best for the woman I loved and still do so very much.
Gayle - Hope your not missing the caravan too much and Martine has settled back into school ok, please say a big hello to her and Martin from Scott and I, hope to see you soon again.
Eileen - Mum was treated at the Western too and we got scan results same day normally a Wed at 12.00 was the scan and we were to return at 2.00 pm for the results, hope Rob is doing well enjoy your pampering day.
Sally - I would not be waiting 4 weeks to hear thats must be awful for all of you, hope your Mum is doing ok.
Well folks its relatively quiet on this thread so hope thats a good thing, I won't be around as often as I was when I was living this terrible illness as for the sake of myself and more importantly my darling husband and family and friends I have to move away as the last 2 years of my live have been all this illness and Mum, I need time for me now to start being the wife I was to Scott to continue being a caring daughter to my Dad and starting to remember my lovely angel before this horrid GBM 4 took her away from me. I will drop in from time to time for a chat or if any of you need any advice and to those of you I do speak to persoanally I will always be there for you all, keep fighting and have all the hope in the world to keep you going.
Death is a heartache No-one can heal But love leaves memories of my lovely Mum that no-one can steal. - and oh how so true the memories are mine forever and they mean more to me than anything this world can hold.
Hope everyone is as well as they can be on this wet and cold day, on a brighter note got a text message from Dot yesterday, Rodger is home and doing well after his op on friday great to hear this fantastic news.
I dream of figi, most of the questions I asked our nurse were done when Martin was in for his radiotherapy, I would be fortunate to get some of her time, also on the telephone when Martin was asleep as he really doesnt want to know anything about this evil disease, now unfortunelty our nurse has been off long term sick since february, thankfully we have another nurse at the hospital where Martins debaulk was done and she has also been fantastic to us.
Sallye, We usually wait for 2 to 3 weeks for scan results it is horrendous having to wait this time, 4 weeks that is disgraceful, as it is such a worry waiting for the results the hospitals that do it on the same day are fantastic it would be great if we all could have that.
Lorraine, hope all is going ok for you today at your councilling session and also that it helps you greatly, you deserve that. Stay in touch and take care love to you Scott your dad and wee Sandy hope to see you again soon. xxx
Julie, thinking of you at this difficult time. xxx
Everyone else thinking of you one and all, I am off for a little nap now Martin is in a no sleeping mode at the moment and has lots of energy, he has been up all night trying his whole wardrope on, and he asked my opionion on everything just as the alarm was going off, I was starting to fall asleep, so now its nap time before we go for Martine.
Hope this finds you all well & bearing up in the circumstances.
Did anyone see the article on Sky News website about this new Proton Ray (in USA) that is so accurate it can pinpoint cancer cells in the brain and not damaged the brain cells??? A young boy was taken over by his parents as he had a brain tumour and he is now ok, no brain damage, his sight is perfect and he's back at school, amazing or what. The Government is talking about bringing it over to use on youngsters as int he long run it will save them money (on medical care) but will only be for use in England. I posted a comment and you can guess it wasn't complimenting them on their decision, I pointed out that 1) The whole country suffers from cancer & 2) treating older patients and getting them back to work would also save money, no benfits to pay and no expensive medication to keep them functioning. Please have a read and post your comments, we need this machine it could save lives and ok maybe it's too late for our loved ones but the future generations shouldn't have to go through what we have.
Where did all that come from? Rob's not good again today, had to get Doctor out as he is loosing his balance and not eating much at all. Had his Dex put back up again to 4mgs (don't see the point in keeping reducing it) so hopefully it will help. I seem to be watching him all the time now for little changes, guess I'm just paranoid now that he's into his 15th month (they only gave him 12 - 14mths).
Lors, Gayle, Dianne, Woody, Rona, Sallye & Julie love and hugs to you all and to everyone else on this site.
Lorraine, I don't usually come onto this thread and have never written a post, but just wanted to say that it is lovely to hear from you - you have always been such a wonderful support to everyone going through this awful illness and I wish you and your family well- Scott may be a wonderful husband but you are certainly a wonderful lady! Take care now x
Second debulk appeared, initially, to go well last Friday. Roger was back on ward and scoffing a big meal in no time! However, having been released from hospital on Monday, he was, sadly, readmitted on Tuesday evening due to excessive urination. He has been diagnosed as 'Cushingoid' and, currently, they are reducing Dexamethasone (hoping to take it to zero in the next 3 days). Surgeon assures me they've removed most of the residual tumour and other suspect areas and dealt with the tumoural cyst by aspirating it.
We met with him today and I had to confirm that neither I, his daughter or brother, have seen any improvement since the operation, i.e. Roger still sleeping up to 20 hours a day and very, VERY confused. Did not know I had spent 6.5 hours by his bedside yesterday, for example.
I know it's early days - tonight heralds the 7th day since operation. I can't help feeling my Roger is slowly being consumed by this dreadful progression of the tumour. We are going back to oncology clinic next week to discuss PCV regime. I am feeling very anxious about the future - not for me but because of all that Roger has already endured. OK..........scared for me too but don't get much time to think about that because too full of angst about his overall condition.
I'm trying to remember all the good things that have happened in the last year but it's hard when this situation is changing so much for the worse.
Hopefully, he will be home tomorrow but I don't think life will ever be where it was even 3 short months ago.
Hardest part of this journey so far. Not knowing what tomorrow will bring or how Roger will be is the toughest part right now for me, our children and friends.
thinking of you and Roger and wishing you both some love - it's SO tough and unimaginable this whole journey we're on , i still don't believe it's happening some days even when we're living it and I guess this is just how you feel too - Your post brings me to tears - Why were we all picked out for this awful experience ? Well we weren't of course, just sometimes things feel that way when the rest of the world rolls blithely on . Dear Dot, just wishing you both love - Keep the faith and know that you and Roger have shared and still share something remarkable, despite this awful thing - However it goes , that stands and always will - Say hello to him from us - Much love, xxxxx Joan and David
Today has been a very strange day for me, I was dismissed by my employer Scottish Gas today after 10 years service, because I have been off work for over a year now!!! If I had agreed to go back full time straight away it might have been different, but as you all know I am not in a position for that, I was very angry at first then sad because I will never work for them again, then I got scared thinking what happens if anything happens to Martin, what if I never get another job, but then reality hit home and I would much rather be at home with my Martin and Martine, than work for people who obviously think so little of me, when the time is right I will get another job, and it will be an apposition company.
Martin has so much energy at the moment he never stops cleaning tidying, trying clothes on emptying wardropes and re-arranging them where does he get all the energy he puts me to shame and to top it all he never sleeps anymore than 2 hours a night, anyone else experiencing this???
Dot, so sorry to read about Roger hopefully it will just be him recovering from the op and he will be back to himself soon, I know exactly how you are feeling the worry,stress and anxiety about now and the future is so bloody awful, I am here anytime you fancy a chat, love to you both. xxxx
Eileen, was speaking to Julie last week she was telling me all about the new machine it sounds amazing lets hope they bring it over here, hope Rob is better today. xxxx
Gayle - that is truly shocking news. You'll get another job when you need to - you come across as a very determined, capable woman. Why would anyone not want to employ you? Sally E
