We Talk Brain Tumours

Your son sounds like my youngest daughter!!!

Your dad also sounds like mine!!! Fit, healthy and very active!!! A week after his op he did a 10 mile walk!!! It's the side effects I think he's more worried about-and again think he will only have the treatment for us.

Have a peaceful evening x

Hi everyone, and welcome Tasha.

I was in the same situation as you 10 months ago - my dad was 63 and diagnosed with a GBM 4, and it came like a bolt from the blue. It's an experience I wouldn't wish on my worst enemy, I've never known anything like it, but do take heart from the fact that my dad (who also had most of his tumour removed, and the rest blasted away with radiotherapy and chemo) is still going strong, living a normal life. A little tireder after all the treatment of course, and suffering from a weakness on his right side, but other than that, he is the same dad (albeit one we appreciate SO much more!) that we had before all this happened. He has regular scans as he is taking part in a drugs trial at the Northern Centre for Cancer Care in Newcastle, but he has coped well with the treatment so far.

We are obviously aware this situation could change for the worse, but one thing we have learned is to take each week as it comes, and we make sure we plan for treats like little holidays and occasions so that he can reach each 'milestone' and provide all of us with great memories for the future.

Martyn - I'm so sorry to read of your upset this week. I can only echo what everyone else has said in terms of the fact that it was an accident (which could happen to us all) and it only goes to show up the disgraceful lack of support you've had from so-called care services.  I hope you're not beating yourself up about it any longer, and hope Doreen is recovering from her shock.

And to everyone else on here going through a difficult time at the moment, I'm so sorry to read of all the heartache and hope there is light at the end of the tunnel for you. I hope I can be as strong if/when I find myself in the same situation with my dad - especially you Naomi. And Pete, you're amazing. Sorry to those I have missed by name (oh Debs, you are just brilliant, your humour and stoicism are inspiring). Sending strength and love to all,

Debbie xxx

Debbie-thank you for your message. I try to reply on here, but the words I type don't seem to come out right! I think I'm trying to say that it's good to see a small glimmer of the sun through all the clouds.

Naomi, I've just re-read what I wrote last night-I hope you understood what I meant x Your Dad sounds like a wonderful man and he must be very proud of you all x

Oh my look at the all the Debs, Debbies etc, if anyone gets confused you can call me Debs P if it helps .........the curse for me of being born at the end of the 60's.  I blame my mother for picking one of the most popular names of the time.  However, I will forgive her a tad as I was her first and its hard first time around.  I called my eldest Jack and followed in my mothers footsteps of choosing one of the most popular names of that year!  When we used to take him to ballparks etc and call his name, half the boys in there would stop and turn round   Although I was anal in using 4 letter names for the next two, I never made the same mistake again, there were no other Sean's in my 15yo's year and no other Lara's in my 13yo's.  Although it was harder to get personalised items for......damned if you do & damned if you dont!  Sheesh I am well off topic, ah well blame Buttercup!

Kazz, my fellow "sprinkling" (I like this term lol) and Oligo, mine was supposedly a two on the turn to a three!  I don't have the licence issue as I have never driven.  Failed my test at 17 and now at 44 its not worth the cost to us and the world is a safer place without me on the road anyway.  Your registrar sounded very harsh about the kids having legs, well der!!!!!!!!!!!!!! Do you have a good relationship with your onc or GP? Perhaps they might be better to approach.  Good luck with it, I am very lucky as my husband is an excellent chauffeur.

Deli, thats a fantastic result for your son, especially as its a whole year early!  Gotta really celebrate that, although perhaps you don't feel like it, he needs a fuss methinks   My son just passed  5 AS Levels, but he's dropping two subjects to concentrate on Double Business and Sociology for his final A Levels next year.  My middle son is going into year 11 and will be taking his GCSE's stress all round next year!

Waving hi to all the other passengers and sending love & strength for those who want or need it.

Debs! You made me laugh about names and driving! I noticed there are a few Julies on the board too. I can blame that on my sisters but thankfully they managed to jump in front of my dad who wanted to call me Joyce!! Bless him!

On the subject of driving, it is one of the most stressful physical areas on me as a result of Steves illness. I swear my confidence has gone on things like reversing...or I could blame it on my new glasses. But as soon as I start to reverse and he is in the car, I swear that Mrs Bucket ( Mrs Bouquet) has got in the car! 'You're too near that line, you're steering out etc etc etc' and the more he nags the worse I become! One day I actually threatened to stop, phone his mother and get her to pick him up so I could go home- we were on our way down to hers. The fact that Steve was a driver for a living, and much as hate to admit it, a very good driver, has made the pressure even greater.

Martyn. even though you had that little accident with Doreen, I actually thought it was a lovely idea that you were trying to give Doreen a bit of fresh air.  Don't blame yourself at all. The fact that apart from the GP and the odd nurse visit you get no support at all...... It makes you wonder what you need to be ill with to get support. I have also heared of this happening with other people that have other long term needs too. You take care there.

Pete, I did have a wee tear in my eye when I read about you looking at the clothes that Ali had ironed. Its a reminder of the days before... You take care.

To everyone out there thinking of you all and do take care.

Julie x

Naomi!

Forgot to say congratulations on your sons exams results! That is brilliant! I bet you are so proud of him!

Tasha - please don't worry, you didn't offend me. I often worry on here when I read something back that I've unintentionally caused offene but we're an understanding bunch on here and don't often take offence.

Naomi.xx

Debs - thank you. My son is going in to yr 11 too, I have promised him £50 for every A* he gets next year (if he gets any, that is) to motivate him in to studying. Hope it works!

Zanandu - thank you very much. I am proud of him as learning doesn't come easily to him - he has the concentration span of a gnat!

Naomi - I  can't even begin to say how strong I think you are in getting all your children ready for school with everything else that you have on your plate at the moment. I know how hard it has been just getting 1 ready for high school so hats off to you!  

Although we have had a pretty good week, my heart strings went before when my daughter asked me when can I put my high school uniform on for you dad, his response was will u put some cd's onto my ipod please and she did with a little tear in her eye.

I cannot believe how brave she is being at 11 years of age watching her dad go through all of this, it breaks my heart.  I was 32 when I lost my dad and it broke me.  I am amazed at how much children can take.

We are having the fashion show tomorrow afternoon as that seems to be the best time. Hope it happens as she is so excited.

My thoughts go out to you all tonight, keep strong and hold on in there! x

I hope everyone's having a good weekend.

Ali's spent pretty much all day in bed sleeping peacefully and I've just finished feeding her before she slipped off to sleep again.

After dinner, I gave her a hug (well as much as I could do while she slept in her bed), I had to come away before she could feel my tears on her face.