We Talk Brain Tumours

Pete - What a wonderfully honest and reassuring explanation of how it was for you. Of course I will be there myself soon, not too soon I hope though, and, as I've mentioned before, there are a few 'friends' out there who keep reminding me that I will fall apart when it happens. I find it a little worrying as it's not something that has ever happened to me before. It's almost like they're wishing it on me! So it's good to read of people who have actually gone through it and see how you are all coping so brilliantly.

Naomi - I hope I respond in exactly the same way as your Mum. There will be so many things that I will miss about Tony, we have been married for 27 years (together for 29) with never a dull moment. The hole that he is going to leave will be enormous and will be hard to fill. I relied on his opinion for so much of what I did, it will be hard to start making decisions on my own. I find the idea more than a little scary to be honest.

However, I have to admit that I long for peace and quiet. Long to sit in a house with only me in it, enjoy the solitude and be left alone with my thoughts. Fortunately I enjoy my own company. Despite being married I have had many holidays alone, I prefer going to the cinema alone and get very irritated with friends who insist on coming shopping with me. I am hoping that it is this side of my character which will see me through. My son sat next to me last night, put his arm around me and said 'You don't need to worry Mum, you will never be alone, we will never leave you'. Bless him for his lovely words. I didn't have the heart to tell him that the idea filled me with horror! What a terrible mother I am!

Hoping we all have a lovely day, filled with precious memories and laughter.

Pam

x

Naomi.  Yes, "contentment" is a very fitting word.

Pam, I think you will do fine.  Of course, everyone approaches the departure of their loved ones in an individual manner, but I hope that you will also be calm and accepting.

I think maybe how we approach the care for our loved ones before they pass on reflects on how we cope afterwards.

Hello, I've not posted before, but been a member for a while.  I was diagnosed with an AA3 in aug 2009, had it debulked & radio followed by two years of 'clear' scans.  Now the bugger has returned and have just completed cycle 2 of 6 temozolomide.

Since it has returned I have been experiencing right side weakness which is progressing fast.  My oncologist has suggested that I go on to steroids but I'm not too sure, my next scan is on 9th feb.  Any help is really appreciated.  Jo x

Jo, very sorry to have heard of your news, but you're here now and you'll get as much help and support as we can give you.

The steroids that your oncologist has suggested should help to reduce the swelling that may be causing your latest symptoms.  Of course your oncologist knows more about your situation than I do, so I'd be inclined to take his advice.

hiya jo...I had stereotactic radiation yesterday to remove a little bugger..!

i've been having small fits and weakness down my right side for a few months...that's how they found it on the left of my brain....

i've been on steroids ever since to reduce swelling...

my neuro surgeon gave me a time table yesterday to reduce the steroids over a month...

so when I next see him. I won't be taking any...

hope this helps....jackie xx

Pam - I wish my mum would join here but she refuses to - it's the decision making she struggles with most too! She doesn't cry often (that I know of, anyway) but she did break down in the building society the other day!! She too loves her own company (as do I). The hospice counsellor rings her regularly and last month asked her what she was finding hardest, she replied "saying goodnight and good morning to someone" and they were shocked in that most people say being alone in an empty house is often the hardest thing. They were married for 43 years and led very independent lives. Like you, they holidayed alone, spent long periods apart and enjoyed their separate lives. During dad's illness they both struggled with spending so much time together. Oh the irony!

If there is anything "good" about this disease, or any terminal disease, it is that we had time to say everything we needed to. Old grievances were sorted out, there is nothing now that we wished we had said. We felt we followed his wishes as best we could and managed to ensure he had a dignified and peaceful death.

I will be silently walking with you over the next few days, weeks etc. Keep going Pam.

Naomi.xx

Welcome Jo, I'm sorry to read your tumour has returned.

Steroids are a necessary evil for this illness and they can dramatically improve quality of life. However, like Pete says - your oncologist will know best.

I hope your appointment goes well.

Naomi.x

Thanks Pete, Jackie and Naomi for replying so quickly!!  

Jo xx

Hi Jo...Sorry you have joined us but you are in the right place for support on our train.

Sometimes the steroids are a necessary evil if there is swelling around the tumour and it does seem to be the default with BT patients . As everyone has already said ...be guided by your Oncologist or get a second opinion if necessary. From what most of us have seen....the steroids can help enormously at different stages .

Pete-  Glad you moving slowly on through the train .... everyone moves at a different rate. I do it in stages...last week I  my changed BT emblem for my own picture on facebook and yet still have all Mark's clothes in the wardrobe. I have started my getting healthy and cut down on the wine phase and yet still keep all my daily emails to Joanna from the dark days as my diary of how I felt .  Friends who have used this site have talked of being told by relatives that they cant move on until they stop their Daily read of this Forum...... Maybe that is when we reach the last compartment on the train and step off? I do know that our loved ones would be glad that we are inching forward to normality. It doesnt take away any of the memories that we have..it will only enhance them.

Get training........

love cathi x

Cathi.  I don't see myself as moving through the train or feel the need to step off.  From my perspective, Ali has left the train, not I.

I'm here to share my thoughts, feelings, and experiences.  I'm here also to try (in my meagre fashion) to give back to those who follow.

Without WTBT, I would certainly be in a far darker place and would have found the past 10 months extremely difficult.  I feel the need to stay here, to support (and occasionally get laughed at) for as long as people appreciate my presence.