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.
I am so very sorry for your loss, and also for asking about him I am so sorry I did not realise that your beloved husband passed over, I hope that I did not hurt or offend you, once again I am so sorry, hope you are as well as you can be.
Sorry for not getting back to you earlier - no you have not hurt or upset me only what has happened can do that. I did not mention at first that my husband had died because I do not want people to always hear the worst. Miracles do happen, we were told by our Consultant when we were told that there was no cure for my husband that he had told another patient 8 years ago that he only had about a year to live and that he should live life to the full. This patient did and spent all his money on holidays etc. going for regular check-ups he always blaims the consultant for being broke! There is always hope and praying helps all.
You take care - it is true, that it is not only the patient that suffers this affects all the family especially those living with it 24/7.
Our neurosurgeon also suggested that we live life to the full or go on huge holiday when he told us the diagnosis after the debulk. Quite when we were supposed to go on holiday I never found out as rt + tmz started after 4 weeks then tmz so that was the following 9 months taken up!
At the time I did seriously think about selling the house and walking round Britain (a retirement plan we have) but happily my partner B, ever practical, asked where we would live when we got back!
I understand why the surgeon said it of course. How do you give youngish, previoulsy healthy people that sort of news? But we have managed three holidays since diagnosis now and are planning summer 2009 at the moment. Hope is fantastically important on this journey.
I always seem to be saying this lately but I just can't imagine the future. It's a cliche but one day at a time really is the way to go isn't it.
I'm an avid candle lighter. Many of us need whatever light there is I think. I'll light one for you if I may.
Best wishes, Keep on talking, these bt threads are so amazingly helpful I think.Â
Thanks for your message - never give up hope and never put anything off until tomorrow. Your husband sounds good as fit as the drugs will allow! I pray for you both nobody should have to go through what both patients and families do in these circumstances. I am just thankful to God that my husband was in a coma for the last 3 weeks - up until that time he was able to walk, talk, etc. he never gave up he believed he was going to be cured but unfortunately for us left behind God had other plans.
Hope is a great thing and I for one will certainly never give uo hope, Carole there is a lady at our clinic who has had this monster for 8 years also and the only treatment that she has had is the initial 6 weeks radiotherapy, and her tumour is still stable, there are also people who are 2yr + and doing really well, so while I hear stories like this and my Martin is here with me I'll never give up hope, Carole it is very nice too see your still here to help others like me thanks very much.
Wish I had known about this site 2 years ago, I don't feel so alone now - if you can understand that. I knew other people were suffering but I did not know anyone who was at the time my husband was ill. I felt so isolated and alone. My two daughters and son-in-laws were a tower of strength and I know I could not have coped withouth them but when it is your sole mate it is very hard.
Carole, I think I know exactly what you mean. The particular problems that bt's bring are difficult for others to understand. B is doing well and I am thankful to an extent I can't express.
Recently, like Gayle, we had fantastic mri results but people we know were surprised that we have the same thing again in two months time.
I cant begin to imagine how you must feel after losing your soul mate it must be one of the worst feelings in the world, its very brave of you to come on here and speak to us I am so sorry you were not aware of the site when your husband was ill.
CH
Martin has really perked up since getting the results I think many of the symtoms he had was down to stress and worry, he has even been on the computer the last 2 nights researching the family name, Martin never bothered with computers before must be a new lease of life long may it continue.
Hi all, haven't posted for a while, Gayle i'm so happy to hear that Martin's scan results were good, hope that you will be able to sleep better.
Things are pretty bad for me, i have posted on the bt site so you can catch up there.
In a nut shell BJ's treatment has now been stopped, we are approaching the end of our journey, i stopped work and to be quite honest i'm exhausted by the day. we have a carer coming for a couple of hours each day and even she feels whacked by the time she finishes. BJ is changing so much and for the first time in all these years i am really scared of whats coming. I'm not sleeping very well, don't paticularly like eating, i think that i/m just giving up. It's hurts so much to see him deteriorating and not knowing what is happening.
Sorry, no longer have the words to say how i feel. Take care all
So sorry to hear about BJ, it must be so difficult for you, Is there no trials available at the moment that prof Cruickshanks could try out on your beloved BJ, are you getting some help with the kids you really do have your hands full, if you need to speak night or day just call me I am here for you.
