We Talk Brain Tumours

Hi to all

Naomi one of my sons had a hypospadios operation 33 years ago. We were told as soon as he was born there was a problem as you were probably told too. We were devastated but glad that there was an operation. He had an op at about six months old then a couple more as he got a bit older. Its a very difficult operation on someone so young isnt it and in such a delicate area. I didnt have anyone to talk to back then, didnt tell anyone in the family or friends. Is it different nowadays, I dont know, as you have to think about the future for the little men. Even now most of my family and friends dont know, we just said he was being circumsised  back then and there were complications. So I know what you are going through for your little man but things will get better. You want to be with him tomorrow but your hubby will be there for him. He may just need some anti biotics hopefully.

Will be thinking of you tomorrow. Stay strong mate

love jmd xxxx

Apologies to anyone if you think I should have done this one to one but hey I can blame Buttercup if I do something wrong, right!!!!  So here we go, it's gonna be a long one!

Ilowe, I feel compelled to answer as I believe your sister is in a very similar situation (and location as me) I had my brain surgery at Queens (Romford) and first diagnosis was grade 2 Oligodendroglioma, statistically 7 year life expectancy.  That was given on a Friday by Tuesday I had been contacted because a portion of my tumour had been sent to a more thorough lab in Cambridge and they were "unhappy" calling it a low grade and I was upgraded to a 3, I always say that British Airways upgrades are so MUCH better! Statistical life expectancy now 2.5 to 3 years!  BIG difference.  My oncologist and specialist NO nurse still think it was mostly a 2 with a portion of it on the turn to a 3 but its better to be treated aggressively.

I had 6 weeks of radiotherapy given in two different strengths (best way I can describe it) followed by 6 cycles of oral chemo (Temozolomide).  Below is a photo of me in my mask on the RT table so you can understand, looks far scarier than it is....

I was petrified the first session but by day 2 I was fine and by week 2, I was an old pro (not literally mind lol - please excuse my sometimes out of place sense of humour, its what gets me through).  What I want to say to you is, apart from having an almost non-existant short-term memory (which causes a lot of problems on its own to be honest), I am living life fairly normally (well hey normal is over-rated anyway) almost 3 years on and am now on yearly scans, my next one is due in February, I wont say its easy because I know everytime I have a scan, Buttercup (my tumours name) could come back but so far she is behaving and allowing me to continue watching my three teenagers drain our bank account on a regular basis!  I am 44 and really hoping to live long enough to see my youngest child, Lara 13 finish secondary school in 2 years time.....longer would be great but I don't want to seem greedy! 

Naomi, hope today is bearable as you say goodbye to Dad and he gets a fitting send off  and that Herbie (I love his name btw) is recovering a little better now.  Ange, my thoughts are with you also as you send G off for the next part of his journey. 

Love & Strength to all who want or need it xxx

debs u are a bloody fantastic inspiration and help to everyone and all that need it, words cannot thank you enough for all your support

Naomi, hugs and love to you on this very difficult day and hope that Herbie soon starts to feel better - love his name too xxxx

Ange big hugs and love to you too for tomorrow xx

For some reason I am unable to post on my notebook at home so can only post when at work?

I have spoken to two friends since last week regarding the stupid nurse and the DIET - an official complaint is apparently going in.   Behavioural problems are getting so bad now, Alan thinks he can do whatever he likes and is so so moody and at times agressive me being enemy number 1.  I am finding it all very hard through this stage of the journey, feeling sorry for myself and the loss of my husband, I know he is still here and small parts of him do appear but very rare.  Take care everyone and please keep on posting Julie xxxxx

JMD - thank you for that post. My eldest son (15 1/2) was born with it too and yes indeed I did tell everyone he was just being circumcised.

Because of the rise in IVF pregnancies (Herbie's wasn't) the incidences of hypospadias have increased five fold in the last ten years, they aren't sure why though. We were allowed home in time for the funeral today but only the promise that we take him straight back tomorrow morning. Ho hum .....!!

Thank you to all who sent me good wishes. Today was very hard but it was a perfect service. I feel like I am finally trying to accept that he has gone. I didn't take my children but my relatives who live in NZ wanted it webcasted so I showed my kids tonight and they were devastated so at least I know I made the right decision on that one.

Ange - lots of love to you for tomorrow. I will be thinking of you and your daughter.xxx

Dear Naomi

Glad to hear today went as well as can be expected. Hope your boy is ok for tomorrow.

Ange thinking of you tomorrow.

lots of love jmd xxx

Page 4?? I'm disgusted! Bumping us up.

Ange - have been thinking of you all day today, I hope it has been everything you wished for.xxx

Been at the hospital all day with Herbie, devastated to learn his surgery hasn't been a complete success and now needs further surgery (they were moving his urethral opening from the left to the tip of his penis and now it's on the flippin right side instead). Took my mum and sister with me as mum is feeling really flat after dad's funeral yesterday. The hard work of grieving starts now for mum.xx

Love to all.

Naomi.xx

Dear All,

I have been catching up on the posts, I don't know, but since this site has been redesigned it doesn't seem to 'flow' as well as it did. I haven't really ventured anywhere else on the whole site, don't feel confident navigating it, and therefore the site feels like it has 'shrunk' somehow for me...

My warmest wishes Ange, Sharron and Naomi, I have been thinking of you all over the recent days and willing you strength to cope with experiences unimagineable to many, but something you are all living through with fortitude and grace.

Debs, I think what you have shared for Ilowe is really helpful, generous and honest, and when I think back, I wish we had had information like this, at the beginning, straight from someone who understood because they were living through the experience and all the feelings and emotions that accompany it.

JM7 - I really understand what you are saying about the changes your husband is experiencing. Dave, my husband was diagnosed late last year, (have a look at our profile, if you want to see more details about this, just reminded me I need to update it too), at present, we have been told that the tumour is not showing on the scans and we go back late December for a review. On the one hand this is great news ,on the other, perhaps I am asking too much about the rate of progress. Dave is still very tired quite a lot of the time. He is still on a low dose of steroids, because he seems to go haywire without them, but f course they have side effects too.

Of all the things, I have found the hardest to come to terms with is the changes in manner, it's Dave but it isn't. He seems to have lost the motivation to pursue interests that were very important to him before, his memory is significantly affected, and some days, logical thinking and thoughts are really off balance. Because of where the tumour was sited, it has also affected speech, so words can get muddled or used out of context, especially if he is tired.

The tiredess is also exacerbated I think by the Eplim (anti-convulsant) Dave is taking, because he has experienced a number of seizures. I think it is worth looking at reducing the dose, or trying something else that maybe does not have such a sedative effect.

Some days, I just find it all so hard and shocking for him, I don't know what's more difficult, spending time with people we know and knew him before all this, or people who have not experienced him other than he is now.

Frm my perspective, it's like walking a tightrope, you cannot look down for fear of falling, and you cannot go back, thinking about life before this illness is like torture. I am trying to go day to day, planning little things, making life as comfortable and pleasant as possible.

Sorry, don't want to pull us all down, but just so tough mentally...

Love and best wishes to all.

Elaine B.K.

Hi all you wonderful people,

Our dear G was laid to rest today and was he given a magnificent send off. Near on 300 people attended his funeral and the two friends who did his eulogy did an absolutely fantastic job.  Our baby did us proud, she was so composed and accepting of all the adult grief.  It was only when we got home that she let herself go and I have just left her sleeping.  When we got to the rugby club they had put together some great collages and we shared songs and stories over laughter and tears. G would have loved it.

Naomi, I'm sorry to hear about Herbie's op and I hope that things soon settle, you certainly deserve some good luck.  Elaine, sent you pm before reading your last. I will get back to you.

Sharron i hope your dad is on the mend.

Debs, You are amazing as always.

To everyone, I thankyou from the bottom of my heart for being there, you have been my lifeline.

Ange xx