We Talk Brain Tumours

Julie, you rant all you want my love. I do agree with Pete that some outside help is required. I do know that the antidepressant's did and still are helping me. Please ask.

Those ahead of me on this journey will most probably understand this. I know Doreen's passing was for the best, but everyone keeps repeating it over and over. Even those who didn't know her! I've not been too bad until today, except for my regimented day having gone. I used to work on auto pilot, but now I seem to be wandering around aimlessly.  Today has been 'paperwork' day. This has been the day I have been communicating with financial set ups, and apart from one, have all been very empathic. One call centre lady kept asking me if I wanted home contents insurance after I had repeatedly informed her of my reason for ringing!  It was as though I was steadily deleting Doreen even more from my life with each account etc I started the process of removing her from.

Lots of love and good wishes to you all. Martyn XXXX

Yes Martyn, I feel exactly the same as you, I'm still fairly calm about things.

I used to wander around somewhat aimlessly as well, but now I feel somewhat free and able to go out and about without the nagging feeling that I should get home again as soon as possible,

I also had a lot of sympathy from the various companies when I was tying up Ali's financial details, and generally people were very helpful.  I do still need to finish off the probate application and sort out her car and driving license.   You're right that it feels wrong to wipe out her identity, which is kind of why I've been taking my time over things.

My attention has been distracted of late as one of Ali's closest friends (who supported us so much during Ali's illness) had a stroke just before New Year.  So, I'm going back into hospital to visit her just as much as I can do.  I don't mind saying that it's brought back a lot of old memories and emotions.

I've been back to work this week and waiting to be sent on my first project.

Sigh, life rolls on...

Oh Julie my lovely, wish I could give you a great big hug, like Pete and Martyn have said, YOU HAVE/ARE COPING, that doesn't mean that a little help wouldn't go amiss.  I have a lady from Macmillan that phones me up every couple of months to see how I am and how things are ever since I phoned them in a complete state while at home alone not long after my diagnosis.  One day it just hit me that I was going die a horrible death and leave my kids without a mother and Tony without a wife, we have been together since we were almost 18 years old.......it felt like I had run into a brick wall and I couldn't even breathe to talk to her.  Amazing how she managed to calm me down and gave me an outlet to say how things really were, as I don't talk to Tony or the kids about it if at all possible.  I want my family life to stay as normal as it can for as long as it can, if that makes any sense.  I seriously recommend you phone Mac or speak to the Mac nurse, I used the number on this website.  'Jackie' is due to call just after my MRI results in February and these days we usually laugh a lot but I so needed those first few phonecalls from her.

Pete & Martyn, it must be incredibly hard to hand in bank cards, inform companies and as you say, almost make your loved disappear off the face of the earth, leaving no paper trail.  They will of course always be in your hearts and memories but such a hard job to do so close to losing them.  Pete can I ask what do for a job??

Sending love and strength to all who want or need it xxx

I stumbled on this site months ago, but I was terrified of using it... to write it down and talk about it all so openly is like acceptance of what is happening and I wasn't ready for that.  I'm still not ready for that. I can totally understand when JM7 says that people think she has coped when really she doesn't feel she has.  This week especially, after some bad news, people have said how amazed they are at my strength and how I have coped with it all, they don't think they could have done.  But they could. You just do, you have no other choice.  But a lot of the time when people have asked me how I cope, all I can say is that I think my coping, is in a way not coping.  I get by day to day, but I don't think I have accepted it, the only way I have got through it is because my brain shields me from the difficult things.  I have my breakdowns, more often now, but I get by from my dads strength not my own... seeing my dad battle through and whenever I ask how he is, his only answer is ever 'I'm ok'.  I don't know where my strength will come from when my main source of strength is taken away from me.

This was only meant to be a quick hello, just to introduce myself. You all sound so brave, I just feel scared.

 Laura, Just a quick hello to make sure your O.K. and to ask how your dad is , were all hoping for some positive news. Love to all the family. Minty. 

Hi Victoria.

I am so sorry you have the need to introduce yourself to this thread. I wish I could say it gets easier, but I can't I'm afraid. However, the brain does somehow condition you to cope easier with the situation. You will find the journey very up and down. I regret not asking for, or accepting help when needed and offered. Please keep in touch with the MacMillan nurse, they can guide you towards the best help available. You will find tremendous help, support and friendship on this thread and I dread to imagine our journey without it. Stick with us and ask, shout, moan or scream as often as you like. Between us we've been through it all.  Best wishes, Martyn XX

Oh Victoria, i remember it took me almost 12 months of stalking the site to find the courage to join, how I wish I had joined earlier. Nothing can take away what is happening or the prognosis etc but here you can open up, say what you really think and feel and get the support you actually need. Keep posting, the new site isnt as brilliant as the old one but you will still find help as you need it.

Martyn, Pete, I did the paperwork in days, just needed to be straight, still have a wardrobe and suitcases full of clothes though and they have come in handy as my son needed a suit for grandads funeral and he had taken his to the USA for job interviews so is going to wear one his dad had when he was best man just months before his diagnosis.  Goodness knows how either of us will cope tomorrow when he puts it on.....

Debs - as always you remain the bright star, I know you have many contacts and the mac nurse but PM me if you ever need someone and I will provide my phone number if you need it.  I remember the b***** scans so well, amazing because in my day job they mean so much but here they make me feel sick with the thought of them, naturally I have already started to pray for you, I feel no trepidation only positiveness, 

Pam, everyone else (sorry memory is rubbish) my thoughts and prayers are with you

Re the Saddleworth hike - friends are offering to walk with me and get sponsorship so please let me have details.  We will be there...

Tomorrow is dads funeral.  I feel so empty, its all so very wrong but as with everything I know I will get through it, same funeral director as for my husband, same crematorium, it will be a test of strength and love but I will cope

Joanna xxx

Joanna wishing u all the srength and love Julie xxx

thanks Martyn and Pete hear what u are saying know what should do but really can t weird should be able what is the matter with me xxx

Hi Minty

Just a follow up regarding night times, we went to the hospital yesterday for the 1st cycle of Temozadol and was told that he should be doing better than he is so all the symptoms we thought was brain swelling from radiotherapy we now have to consider the tumour and will have another scan in a few weeks, but she did a blood sugar which was really high at 32.9 so now the steroids have brought on diabetes so we have a nurse coming today to start insulin !!!!  but at least we know why he was drinking and seeing all night ! so its worth a check, again we thought it was because of the chemo etc

We are both gutted the chemo has been put back a week or so until we sort out the diabetes they wanted him as a in patient but he refused, tomorrow we have physio/occupational therapy and the Mac nurse all doing a joint visit

love and strength to you all, thinking of you all

XX