We Talk Brain Tumours

Naomi, Hope all goes well with your babies surgery, I really don't know how you are managing to cope with it all, yet you still find the time to think of others, you are amazing x

Again thank you all for your kind words, they really do help.  Knowing people care goes a long way.  I have had so many offers of help and flowers and cards have already arrived.  Today I text a friend of Gs to tell him that I would like everyone to meet at the rugby club after the funeral for drinks and food and asked him for a contact to sort things with.  He told me to leave it with him and later text back to say that everything had been sorted free of charge and that they were prparing a fitting send off for G. How kind and thoughtful.

Our daughter is still inconsolable and I feel helpless not being able to take her pain away. She just keeps saying that she wants her dad back and that she needs him to hug her and take care of her. It is breaking my heart and the thought of her attending her first funeral and it being her dad's doesn't bear thinking about.  Again I have left her sleeping in my bed and had to hold her until she dropped off. I feel so lost and incapable.

Love to you all

Angexx 

Ange, once again I am in tears.  You are doing everything right for your daughter, holding her until she falls asleep is just what she needs and I expect it helps you a little too.  There is no handbook for grief, as with cancer its a personal journey and the two of you will work your way through it in your time, at your own pace.  How wonderful that G's friends are helping out and giving you less to worry about.

Naomi, love & strength to your little man today for his surgery........extra hugs for Mum as I can't imagine how hard it will be to see him go off for surgery.  I wouldn't let my husband come to the hopsital to see me to theatre, it was hard enough saying goodbye the night before, let alone again.....besides we had 3 kids to get off to school (my youngest didn't want to go, but she was better there than at home).

I am off out to lunch with my younger sister, she was born with cerebral palsy but thankfully it only affected her left-hand side and not her brain (I am still not wholly convinced of that but then she is MY sister LOL).  She passed her driving test first time, she just needs an automatic car, no adaptions.  She lives in a one bedroom house in the same street as me, my kids LOVE her to bits as she treats them very generously.  Her walking is a bit precarious now she is 40 and she generally has to hang onto me (bit like Dumb & Dumber going out for lunch lol).  But we always have a good laugh at ourselves.

Love & Strength to all who want or need it xxx

Oh Debs..you make me laugh. Your sister sounds absolutely wonderful and gives two fingers to those who do not realise that you can have a happy fulfilled life with any kind of disability...as those of us on WTBT truly understand. Dumb and Dumber LoL! I have a vision in my head which has brightened up my morning.

Ange.It is so good that you and your daughter can bring each other comfort. It is good that she is able to let go. Mine are 17 and 19 and I think they felt they had to put on a face for the world and also because they were trying not to upset me...and me them ..so it is a vicious circle. You will bring each other comfort in the days ahead. She is her fathers legacy. Baby steps.

Wet miserable day up here. Love to everyone.

Cathi x

Rant alert...................................

Took my very proud husband to neurologist clinic today follow for epilepsy caused by the beast.  Greated by a nurse who took him off to be weighed and then he wanted me to come in as the Nurse wanted to discuss matters with us.   My darling husband who is 50 and up until this bloody thing happened to him was a very fit squash player top player in top league played five times a week and a very active farmer, had the most amazing body six pack and all has now PUT ON WEIGHT  surprise surprise.   He has put on 3 kgs since may, had second debulking in July and on steriods and still on steriods.  All treatment has stopped and I have been told the prognosis of only months left NOW  i know no one really knows how long but when this stupid Nurse informs him that he has to go on a diet and exercise, maybe swimming would be good !!!!!!!!!.  I looked at her and politely enquiried whether she had read his notes to which she confirmed and advised that as I was a large lady perhaps we could do this together.      Alan condition now is that I know the tumour is active again, moods memory personality speech obsessive and childlike behaviour have all worsen over the last few weeks.  The only flipping thing he enjoys is his food.  NO WAY is anyone taking that away from him. I felt totally alone with the medical side of things before went to the clinic today but now feel even worse...................................

AHHHHHHHHHHH     well at least that feels a bit better  Julie x

Oh Julie, how abso bloody lutely rude of her!!!!!  I would have felt inclined to say, yes I can lose weight, but I doubt you will ever be a kind and compassionate person!

Pffffft, I have gained weight (not telling how much but I am more than cuddly) and I too enjoy my food.  We celebrate more, we go out if I get a good scan result, we celebrate our birthdays & anniversaries more, because we never know how many more we can enjoy in this way.......aint nobody taking that away from me.......I have a sizeable handbag and I urge anyone to take me on (although I wouldn't want to damage my precious Patrick Cox handbag, it was an anniversary present lol)!!!!!!!

Unfortunately, all the nursing staff see is numbers in boxes, whether it be age, weight, height or prognosis....numbers, numbers everywhere.  We are NOT a number, we are NOT a statistic, we are individual, beautiful & unique. 

I have read lots of information on how good exercise is for BT patients, just to get the heart pumping (however you want to do that wink wink) each day, really can make a difference, apparently it also makes a difference to our attitude too......perhaps that nurse needs to go for a run before she starts work!

So, you two continue to enjoy your food and  just enjoy life however you can!  Me, I am just back from Pizza Hut after being 'sisters wot lunch', I had a huge salad, ruined completely by the dressing I dolloped all over :)

Love & Strength to all who want or need it xxx

Julie! can I come along and you and I can chuck that nurse in the deep end between us!! For goodness sake, hes lost everything he enjoyed and did and she wants him on a diet! And what she said about YOU....how blimming rude!!!! Some people just don't get it!  Yep I think she deserves a deep swim- uniform and all!!!!

Naomi - hope that your son is okay. Thinking of you all there.

Sending Ange another vitual hug there. x

Debs- your sister past her driving test 1st time with celebral palysy? She did better than me! It took me 4 goes. Thats brilliant.

Just to bring a smile to you all.Today Hubs and I took the dog up the vets for her post snip review- shes put on weight so we have to start weighing her food- anyway we then took her up her favorite park and we went for a walk- as we walked across the grass I suddenly heared Hubs say to himself ' You stupid numpty!' He'd only come out with his slippers on!! Then he was looking at the dog- 'Tinks- wheres your brolley? what did I just say- your LEAD!' Life in a BT world......!!

Thinking of you all.x

Julie! I love your rants! You also seem to meet some of the most ignorant rude members of the medical profession. Are you sure she was a nurse and not a patient from the psychiatric ward pretending?? I cannot believe it when I hear that they want to put BT patients who are on steroids on diets. 3kg is nothing!. Not only that...food is the only pleasure left. Imagine saying that you were a "large" lady.....I think all of us large ladies should get ourselves together to pay her a visit. I cant be the only one that eats herself silly when miserable.

Zanadu...We should all get together and write a book about what a BT patient can sometimes come out with which has you in fits of laughter.......

......maybe followed by a black humour one about things said to us all by the medical profession

These are some of mine

" You might put on a little weight with the steroids"   

" This is terminal, inoperable and regardless it will always come back'       Nurse ..."Its not all bad news"

" This sliding sheet is very easy to use"

"This hoist is very easy to use"

Cathi x

My daughter has a hospital appointment tomorrow for a splint for her gammy little  finger (can't explain it, it looks like it has been broken & reset badly), she's always had it but as she is now 13 and curling it under to hide it from friends, its getting worse, so I put my foot down (should have put it down on her finger, might have straightened it) and went through the docs for a referral so she can have a splint made.

Anyways, I digress (as usual) my sister has offered to take us as hubby has his karate club to run tomorrow and the other instructor won't be there......it's not very far from us but I don't drive and have NO inbuilt sense of direction or compass.  "Don't worry" I said "I will bring Tony's satellite with us"......."satelitte" my sister nearly spat pizza all over me laughing "didn't know you were that posh, most of us mere mortals just have satnavs"......cheeky cow, she knew what I meant!!!!!

Oh I did some brain age games today.......wish I hadn't, it was all short term memory stuff, anyways, my brain age is 51.....maybe I shouldn't grumble, as I am not supposed to be alive at that age!!!!!!!!

Love & strength to all who want or need it xxxx

Oh my lovely friends you do make me smile thanks for all your support .  By the way we had KFC on way back from the hospital - sure was good - but Alan ruined it by saying I must kerb my wine drinking then I would lose weight - don t think so lol

Take care all of you and will raise a very LARGE VINO TO YOU ALL  Julie xxx

Elaine B.K. thank you so much for thinking of us all, it's true we haven't met but this site has been the place where you can tell stuff that you can't say to family members and I will be forever grateful for you all xx