We Talk Brain Tumours

Oh Naomi, I cried through all of your post- our paths are so much alike x Your poor son, bless him, none of us or our families should have to suffer like this x

Chris, hugs to you. However long/short our ride is with this cruel cancer, we all face the prospect of a future without someone we love x I'm glad your Dad got to see you get married-that is something lovely to cherish x

Love to evryone else x

Gosh, just realised how many typos were in my post! Shocking!

I really want a glass of wine but mum has gone to her sister's for two nights for a much-deserved break and I am first call for the Hospice so may be needed to drive so can't have one :(

One word Naomi.

Chocolate.

If you have some, eat it.  It'll make you feel better and give you energy for when you need it.

And there's no legal limit either...!

Well if that's your medical opinion and you're giving me permission, I'm sending my husband out for some Dairy Milk now. Thanks Pete!

:)

Firstly I hope I have posted correctly, I'm new to this site, but not to Cancer, my Husband of 28 years has adanoiday systic in his sinus three years ago which responded well tosurgury an radiotherapy. About three months ago he started to get a little numbness in his face and then noticed that his eye site was getting worse, MRI/CT showed that the cancer is back behind his eye.

Our local hospital said it was beyond them and we were referrred to London specialist 4 weeks ago, there was a mix up over scans and the first visit was a waste of time because they couldn't tell us much without seeing them. We are off tomorrow and I'm dreading it.  Since diagnosis no one has spoken to us, other than to say London may be able to do something but it will not be possible to remove because of the location, very hard to get to. It will definitely return because of the type but its usually slow growing...........we left the hospitl shattered and have spent the past few weeks wondering whats in store for us, how long we have together, so sad that we will not get to be OAP's together and we were so looking forward to growing old discracefully!

My husband has been so brave about things, but I think he is perhaps changing things in his mind beause when I hear him talking to friends and family he makes things sound okay, but if thats how he can deal with it then thats okay. Last time things were so different the hospital talked to us about everything and were so positive, this time we feel abandoned. There are so many questions, I was pointed in your direction by Moomy who suggested I might find answers and support here.

 My husband is not suffering any symptons yet other than his eye, numbness and accasional mild headache, but we have been told that at best they may be able to debulk..........what does that entail?

How long before he gets worse?

Whats likely to happen?

How long might he have?

Has anyone any experienc of surgury for similar?

I'm so scared about whats coming, I an usually so strong but I'm struggling, thank goodness for my fantastic family and friends.

Any info would really help.

Thanks

Jacky

Dont listen to Pete, Naomi. It only works if you take the chocolate with lots of wine!

Wait till all the children in bed...feet up and enjoy.

On a serious note. We are all with you....know the stage you are at and only wish we could help. 

Sorry have not been posting but do read all the time. It is an addiction...we are all part of the family now and all the posts are so familiar and bring back all that we have been through and all who have gone on this journey before us.

Am taking my 2 teenagers on an Eastern Med cruise tomorrow to try to gain some strength and together time. Will be thinking of you all and hopefully will be able to keep up to date when Im away.

Love and lots of kisses to all of you tonight,

cathi xx 

Hi Jacky and hubby

Sorry to see that you are a new member to b.t.

My hubby diagnosed april this year. We are seeing new consultant next thurs 15th - hpefully he will be offered a biopsy so we can find out which grade and treatment.

I wish you and your hubby a safe journey on this bumpy ride. If you wish to chat

my names andrea.  (tunathecat)   Hubby for b.t. is attending  John radcliffe hospital oxford.

this is a good siteand has helped support me as a career / endless waits for results etc.,

But a site also found that has good support and advice is on face book brain tumour uk lots of support from careers and peeps with b.t.

All sorts of experiences / long term /just diagnosed its a posotive group and they have set up local groups around u.k.

Andrea and mahmoud

Welcome Jacky...so sorry you are joining our train but glad at the same time ...because you will not be alone for long( they are probably all drinking wine at the moment ..or in Petes case eating chocolate)

Moomy posted that you were out there and so glad you are on.

Have they said it is a BT, GB4 and is it a secondary? Take heart from the fact that they say it is slow growing and the fact that they may debulk. My husband Mark was not given either of these ( to us at that time would have been huge positives). 

I cannot answer many of your questions because every BT patient is different..how I hated when I was told that by Oncologist..but  it is true. I can only say from experience..take each day as it comes and deal with every symptom as it appears. Do as much as you can together while you are still able. Fill the Bucket list and let your husband be positive to his friends... Mark did the same.

Keep posting and you will gain strength and support from lots of amazing people on here who have proved a lifeline to me and to many others. Lots of them will have answers to your questions

Hugs  Cathi x

Welcome Jacky,

I am a brain tumour patient myself and have had to come to terms with the fact that I will not see my kids grow up, marry (maybe) or have kids.....I so wanted to be Nanna and spoil them and laugh when their kids are naughty as mine were and my Mum just laughed at me.  Nor will my husband and I see out our twilight years together.

I am treated in Essex, not a million miles from London but until you have spoken to the specialists I wouldn't presume to tell you anything.  However, once you guys have a treatment plan etc, please feel free to ask me (us) anything and I (we) will do our very best to help you.

Good luck with your meeting in London.

Love & Strength to all who need or want it.

Cathi

Thank you for that message, you always know the right thing to say.

I am so pleased you and your children are going on holiday. It will do you all the world of good, just what the doctor ordered.

Sadly I can't indulge in anything alcoholic as my mum has gone away to her sister's for 2 nights and I am the first person the Hospice will call if anything happens with dad ....

Haven't even got the energy to get the chocolate, I must be ill!!

Bonne Vacances! xxxx